Good afternoon. I'm happy to welcome everyone to the launch of the first ever European Miloma Day. I'm Katie Joyner, the Chief Operating Officer at MP, and I will moderate today's event. We have an exciting agenda for today, but before I hand it over to our president for the official kickoff, we just have a few housekeeping items. This event will be recorded, so if you wish to say anonymous, please feel free to switch off your camera or change your name on the Zoom ID. Throughout the event, please keep your microphone on mute to ensure there are no disturbances or disruptions. We will have a question and answer session at the end of the event. Please put all of your questions in the chat box and specify who the question is for. And one of the MP staff will help facilitate the Q&A at the end of the event. And if you have any technical difficulties today, please use the raised hand function at the bottom of the Zoom and we will assist you. Now I'll hand it over to our president, Lisa Lott Ericsson, to officially kick off the day. Lisa Lott? Lisa Lott, you're muted. Oh, no. Thank you for reminding me. Good afternoon, everyone. I'm Lisa Lott Ericsson, as Kate said, the president for MPE, and it is with so much joy and pleasure. I welcome you all to this, to launch this first ever European Miloma Day. I'm really so excited to see all representatives from over 30 countries across Europe and across all our stakeholders to come together to one voice for the Miloma community. And it has been a goal for us to create a platform to actually raise awareness for Miloma and to highlight all the challenges that are faced to European patients all over Europe. And to identify solutions and also improve lives for the Miloma patients. So the launch of European Miloma Day is a significant milestone for MPE that we are so proud of. So it's with pride and honor that I really happy to officially launch this first ever Miloma European Miloma Day. And the theme for 2022 has been early diagnosis. All throughout the year. So, and we have conducted activities to understand and explore and challenges, the challenges that face for patients and doctors or over Europe. To obtaining a timely diagnosis. So today, as Katie mentioned, we will be hearing from patients and doctors, challenges and experience and findings from the research that we actually have been doing throughout the year. And to talk about steps to improve the early diagnosis. And once again, I want to thank all of you for being here today and to spending the afternoon with us. To support an involvement from the patient community MPE staff members advocates healthcare professionals industry and other partners, it wouldn't have been possible to do this day today. So, I want to extend a special thanks also to all the patients that have so generously shared all their experiences with us. So we have been able to do the research. And together we can actually improve diagnosis and finally improve lives for the Miloma patients. So, that is very important. So with that, thanks again. And now I want to hand over to Katie again. Thank you so much Lisa lot. So our first speaker today will be severing Mullen Schneider severing is a multiple Miloma patient and a patient advocate from France and she will share her diagnosis experience and story with us today. Just a quick reminder to keep your microphones on mute and please leave your questions in the chat. Severing. Thank you Katie for, for this nice presentation. If you can go to the next slide please. So very briefly, it's really a real pleasure to share my story today with you. And I am a 58 year old person and very happy pre retired person since few months only but it's really nice. I've been working in drug development for quite a long time. And I'm a multiple Miloma patient currently on complete remission. And I'm unfortunately with relapse two years after the steam cell transplant but now everything is good. I do have a lot of hobbies, despite the fact that I'm also busy with MP and other engagement. I do like painting sewing, biking, biking, and most of all, looking after my six grandchildren. So that's really great. Next slide please. So I will very briefly share my experience. So what was my first symptoms and the first period of the fact that I was becoming a patient if I may say like that. And truly, for these five months, my lead motive was I need to rest. So I was not really very on alert from any disease, nothing because so far I was not sick at any point of time so for me it was also a new a new pass. I was having a very high pressure from work and that's if workload and I was traveling a lot. So for me, it was something quite normal that I was suffering time to time to my from my back, and I was really tired. I was a bit slow in the morning. This was coming more and more frequent, but that said, nothing really very serious. At least, I saw that the real first alert was after 10 minutes of work after lunch, I was not able to go further and I asked everyone that was with me to come back at my place, because I was really tired. Other than that, it was okay. And then I had a very long break for Christmas I am from France so I always take long holidays so that's the point. And I was really feeling better. Not fully research but still very, very much in good spirit at least. However, the back pain was coming more and more frequently. And the first serious what I am calling serious alert was really few days after I start again work working. I was feeling very tired and then I thought there is something wrong, and I started my journey with and going to to the GP. The point was also I was feeling my back more and more frequently I was not able really to stay in a sitting position now in a standard position so it was really becoming more and more serious if I may say like that. Next slide please. And then I started what I call the marathon of visit because literally it was over the next five months, it was really a marathon in terms of medical visit and I include everything here, but I had to go in five months. Five time to my GP I had three medical appointment with an oncologist I had appointment also with a specialist I had multiple visit with a radiologist and for blood sampling. And this is also something that I will share afterwards. At the end of this presentation, the, the feeling of why we need to go so frequently to to a GP or to a radiologist and so on. And it was always the fact that I had to repeat the same story again and again and wait very long hours in a waiting room. The medical journey for me was my back pain that was becoming stronger and stronger every day. Secretly, I was not able to work anymore, almost now to sit. And I want, I needed up to 90 minutes to get off my bed on certain morning just to give you the feeling and the sense of how I was suffering. And I was not able neither to carry more than one or two kilos which is a pack of sugar for instance so it's really nothing. I was more and more tired and I lost appetite. So, thank you. And then came this famous day of the diagnostic day. And I just need to give you the context of that day, at least in France is how it's working so I did receive at home, the MRI result. And at the end in the conclusion it was a sentence saying few tumors along the spinal column that could look like bone metastasis. It should be confirmed by further investigation. I can tell you when you are receiving this result in front of you, you are thinking there is something wrong and it's really serious. And as I was also working in a medical environment, I knew that it was really, really serious. The only thing that was a bit balancing that was that the standard cancer marker where all negative on my last blood sampling. However, it was a very high level of monoclonal antibody type IGG with a light chain copper. Then so it was a context and then I did arrive to my GP and I gave him the report of everything and I was sitting in front of him. Literally, I was, I was seeing him becoming pale and speech speechless.  And honestly, I asked him to share the bad news and I still can hear me or myself saying, please give me the bad news because I knew it was bad. So after this seven months, all this medical visit long hours spending in a waiting room, I was knowing why I was suffering deep fatigue and heavy back pain. And honestly, I felt relieved, which is perhaps weird, but it is how I was feeling at this day. And then the journey continue on the following days and it was also a new MRI, new imaging, new blood sampling and biopsies also. In, in, in two months almost I had to go for three new bio biopsies one pet scan multiple medical appointment and so on. And I saw for the first time in June. So you remember we started the previous August. And now we are in June so almost a year after I saw an ematologist. The first treatment was towards end of July, I honestly do not remember exactly when it was I, I know it was toward end of July. I was facing also some family challenge but nevertheless it took really afterward long time between the diagnostic diagnosis day and the first treatment. Can you go to the next slide please. And here my, my thinking my lesson and learn if I may say like that, that are split into big, big topic. The first one is what I can summarize with the medical world is hard to understand. And it's very difficult to yes with them. The first thing I'm thinking and I already share that with some GPS and doctors. Unfortunately, the medical people are not trained enough to diagnose or think about rare disease and are not considering enough fatigue and pain. I can understand that because most of the people are suffering of something and are feeling some, some fatigued. However, they must pay much more attention from my perspective and it was one of my, my challenge, at least at the beginning. The other point is, I saw a lot of different people, a lot of different medical person. And it was that they were asking me to go for a bio, even though it was few days apart, or to go for a scan or to go for an MRI. And I was telling them, yes, but you have the result. It's only few days old. So why I should go for another one. So, and it was really very difficult to make them understand that no need of redoing things again and again. And then some also sentences that I was hearing during the medical appointment and the first one was really a shock. It was the one that I was hearing during the first appointment with an oncologist. So it was after the GP, I went to an oncologist. And then what he was telling me was literally multiple myeloma is incurable. However, you are lucky because there are plenty of new treatments under development available in second line and I was not 50. Here hold that this time you are, you, the day before you learned that you are suffering about a very serious disease.  But for me, it was the end of the world, I would say, even though I was a bit relieved, it was nevertheless very difficult to to really accept this sentence. Then I got some sentences, you cannot be included in clinical trial as you work in a pharma companies, it was like that door closed. And then it was, I was really asking why I should wait so long between the diagnosis space and announcement and the first treatment and the only, the only response I got was, we want to be sure before initiating the treatment. And I was thinking, yes, okay, I can understand that you do not want to be wrong in some in implementing something. However, look at me, I mean, it's not a joke.  My bone was, was destroying in very quickly. So I wanted to really start that, but it took three months before. So that was also something very difficult for me to handle and accept actually. My personal takeaway from all these journey is, I see life differently, definitively, I acknowledge every positive moment, and I can tell you, I celebrate all of them, because there is no point that I continue my life as I did previously. So for me, that this is really something very important. I also now took the decision that I go to my GP, almost immediately when so meaning that even though there is something not very serious as a cold or something, I go to my GP because it's, it's a big learning. I do not want to wait and say, okay, several you need a rest because you are tired about because of workload or whatever. But not least, the family environment is really a key success factor. And I would like particularly to, to give a big thank you to my husband, because without him, I would not have been able to go through this journey through this past. I would say so smoothly, if I may say like that. And, and it's it's really very important and I must admit that I'm very lucky with this. So, now you know how was my journey. Thank you for listening to me and waiting for some question if you have at the end of this, all the presentation. So thank you so much. Thank you so much, Severine for sharing your story and especially for sharing some of the learnings and kind of takeaways that we can have from your experience with your diagnosis. Our next speaker I'd like to introduce is Luke Albrecht, a multiple myeloma patient from Belgium who will share more about his diagnosis story as well as his treatment experience. Luke. Luke you're on mute. Okay, should be in. Okay, sorry. Good day to you all. My name is Luke Albrecht. I'm from Belgium, 58 years old and since five years I'm my Loma patient, married one daughter. After high school I attended the Antwerp Maritime Academy. And then I served 12 years in the merchant marine. So I went to see of which three years as a captain. And then I switched to a more landlocked job as a pilot, a river pilot I bringing the ships on the river scale to the port of Antwerp. Beyond that I twice a month I train junior colleagues on the simulator in my free time. I usually swim even longer distances in open water. I read and travel. I should say our myeloma story starts in 2013. The first of May when my wife broke one of her vertebras. And we went to a doctor, but he wouldn't believe us. And a myeloma state hidden from even to an extensive RX three physiotherapist and ongoing treatment from our doctor for about five months. And then the radiologist said the right diagnosis. She had a myeloma IGG kappa, no aggressive factors. She shrank 12 centimeters and 14 vertebrae were stabilized with keto and vertebral plasticity. She had a complete treatment with Velcade and wasn't remission for five years. In that time, she resumed work teaching in high school. After that she relapsed. She had VTD again and autologous stem cell transplant. And after that until present, she's on rivulimid. But she never returned to school again. Of course, our daughter, which is now following this session as well from Athens has herself tested yearly. Although myeloma is not genetic, but she lives with the knowledge of her parents and as well with the fear. My story and you can follow it now on the slides presented. I was diagnosed in November 2017 when my wife was in remission. Though the first symptom a broken rip occurred in June that year. Again, our doctor didn't believe us, didn't believe me and maybe partly because I was very fit at that time. I trained a lot in swimming. After that broken rip the whole summer, there was a growing fatigue that I experienced and I couldn't place it. In September, the fatigue continued. I felt constantly ill-humid and was even aggressive to other people. And I remember that I couldn't even take my bike out of a stand to hold my bike for myself. By October, my back starts to hurt. And our doctor wanted to send me to a physiotherapist, but I refused having the experience with my wife. I started pilates to strengthen my back muscles, but hardly any. The pain and the uncomfortable moving and walking were ever increasing. And at a certain point in October, I had to stop every activity. I could hardly walk. And finally in November, an MRA on the backbone shown the damage. And then after insisting the doctor took a blood sample for a specific test on myeloma. By the end of November, 2017, I was diagnosed myeloma IgA Light Chain Lander with a few typical chromosome failures, a rather unfavorable condition. If our doctor would have known anything about myeloma and actually had two elderly patients, I learned later on. And he was more conscious enough to think of it as a possibility, both in case of my wife and myself, major damage to a bone structure could have been prevented. And even, I think, as a rare disease, even in every uncertain diagnose, a test for myeloma could be done. This disease is too much life changing or even life devastating to ignore it. Why we shouldn't incorporate a specific test for myeloma, for instance, whenever a 50 plus person has a blood tested at random for a casual checkup. And mainly a proper knowledge and awareness of the first line doctors would save precious time for us. I shrank seven centimeters. And during my first week of development, seven vertebrae were stabilized to a vertebroplasty. I could hardly stand on my feet, let alone walk. By the end of December 2017, a month after the diagnosed, I used a walker in the house to move.  I was mentally broken. Remembering being fit and almost an amateur athlete just before that. After Christmas, I could walk without help. And in January, I started swimming, slowly 10 meter, then up to 20 meter. The hard thing was getting into the pool. It was a hard time, even during these chemo sessions, striving for independent mobility and fitness against all odds. In the beginning, I thought then to redirect my job to a more administrative function, but I couldn't was wishful thinking. It was another mental shock, starting to realize that it probably wouldn't be able to work for your for a year, if ever at all. It felt like if someone has cut the world from under your feet, your whole personality and concept of life changes dramatically. The concept of time in your life is totally disrupted. Your body is even a stranger to yourself. But I worked hard on improving my movements and strength, walking, swimming. And in February, I took up the simulator training again as a new motivation to go on. I didn't use the next slide, please. In March, that year, 2018, I was prepared for the autologous stem cell transplant, first by high dose of endocyan going into quarantine with high dose of melphalan. And then on the 13th of March, 2018, I got my stem cells back. The worst thing during this period was the dehumanization of my body and my life. And being utterly sick, it is very hard to imagine that you will be alive again, ever. I recovered rather quickly, picked up swimming again, and by September, I was piloting ships again. I start living once more. And after the diagnosis and the first treatment, as well for my wife as myself, we were focusing to get better in order to retune our work. Next slide, please. I was in remission for about a year. And since then I relapsed twice biomedical as well as clinical. After the first relapse, I got does Alex this data to zoom up the river limit and the dexamethasone. This treatment did not work very well. And after six months, we stopped the treatment. After the second relapse, now the last line I have, I've been treated with keep rollers and oxon and dexa for about a year and a half, of which last six months, I got only the keep rollers and dexamethasone every two weeks. When we started up the keep rollers, the plan was to prepare for stem cell transplant with donor cells. And fortunately, the donor cells of my brother were a good match. But when the stem cell transplant was at hand, all cancer parameters were undetectable. I felt really good. I was feeling very strong and I refused last year the transplant. So I got on with the keep rollers and dexamethasone, which give me another good year. So this last year, my wife and I traveled a lot for instance a round trip to South Africa. I did my swim holidays. I swim even the Bosporus, and I continue normal working schedules. And my hematologist agreed every now and then to defer from the infusion schedule, just to give me time to work or to travel actually to live. We lived our lives, but always with the infusions with the side effects that needed attention from our other doctors or another specialist. It's a never ending story that costs a lot of energy. It's a story of the ball and chain you I mentioned in the slides. And you never get rid of even in your best moments. And eventually I'm growing tired of all those major and minor defects. Next slide please. So at present, my AGA is on the rise again. And what would be next in the coming months and for how long is not sure yet. I question myself regularly, how many years do I have left and how many good years. One more remark in the process to the allergens thum cell transplant that transplant doctor advised me to prepare my last will and arrange other things for my last phase of life. So I did with the notes Republic. I signed the euthanasia papers with my present family doctor. I booked a nurse and a network to take care of me in my last days, which I prefer to finish at home. It's a very difficult mental process, not only for me, but also for my wife and my daughter. But at the same time, it was, and still is a great relief to have all these matters arranged for me and my family. Thank you for what I'm very lucky and grateful to my hematologist, Dr Natalie, but then our colleagues of the hospital and gank. She's very open for any concern doubts or discussions from my side, and she makes every effort to consult all the specialists or other research institutions, universities. If more information is required to make a decision whatsoever concerning another next treatment. Thank you for your attention. Any question will be answered. Thank you so much Luke and severing for being here and being so open and honest about your experiences and sharing your insights and, you know, the feelings and the real challenges that you faced and getting diagnosis and then managing your treatment and your symptoms. We really appreciate you sharing your stories with our audience here today. And now we are going to turn over to two hematologists who will speak about their experience in diagnosing multiple myeloma patients. Our first speaker is Dr Charlotte pollen, the hematology a hematology consultant at the Royal Marsden Hospital in London, Dr pollen floors yours. Thank you very much and thank you for inviting me to help launch this exciting day. Next slide please. I have a slide here about the challenges of my level patients getting to my level diagnosis. But I'm not sure that any of it can be in any way as eloquent or as great an example of what we hear from patients as the two test means we've both heard so both Severine and Luke have really summarized a lot of what a lot of patients that I see in clinic also tell me and that's assuming that we as clinicians want to try really hard to try and help fix. So sorry I've got animations in my slides which is difficult when someone else is managing them so could you just open the whole slides maybe at once. So this was really just to try and summarize a lot of what Severine and Luke have shared with us that a lot of patients or all patients experiences start in the community at home they may experience symptoms. So a time at which they will consult their local doctor, we call them GPS in the UK. And as you have heard from the testimonies we've listened to a lot of times that doesn't lead to a quick diagnosis for patients and I think that's really something that we want to try and address and a lot of patients will end up going back and forth between the community and maybe their local hospital. So we're reaching that diagnosis as we've heard. And we know that most patients on average are likely to present about three times before they end up being referred even on from their community doctor into a hospital or a hematology centre. And meaning that the diagnosis then takes several months to be to be reached and and as we've heard from Severine perhaps even longer before they will start treatment. And around a third of patients that even still diagnosed in an emergency setting so having gone into an accident and emergency department rather than even through a kind of outpatient system of referral. And so all of these pathways to diagnosis are really complicated for patients and they will often then be be left with this feeling of not being heard of not having their symptoms listened to or not being investigated as quickly as we would in retrospect have wanted that to have happened. Can you go to my next slide please. And so why does it take so long for Milo patients to be delayed to be diagnosed well. We know that Milo the Milo plasma cell in the bone marrow leads to the symptoms like anemia, kidney damage bone damage that we've heard Severine and Luke's experience of. And I guess the challenge for general practitioners or even other specialists within hospitals to diagnose Miloma is that these are very, very common symptoms, and they're very non specific so they don't always mean Miloma. And a lot of GPs will potentially only see one or two or perhaps more in the case of Luke's experience. But it's, it's challenging to make sure that we have Miloma as a near the top of the list of things that people are thinking of when they see patients with some of these symptoms Miloma is itself very rare. You could go to my next slide please. So what does that mean for patients well from the doctor side of things it means that by the time was very from a hematologist point of view. It means that by the time we see patients in clinic patients will have more symptoms than they would have done if we had seen them earlier. And that quality of life will have been more affected by those symptoms as we've heard, and they may well be suffering from more pain, more bone damage, and things that are really going to affect patients ability to carry on with their normal work and home life. There are other things that go alongside that so financial concerns that come along with having to have stopped work and still potentially being uncertain what is what is happening to them. And then for me one of the things that's really critical is that through all of this process of perhaps going to see several different doctors both in the community and maybe in hospitals too. There's a loss of trust in medical care and how that medical care is going to be then able to take forward treatment for the disease and so we need to try and address all of these things to try and maintain that that trust and enable patients to then feel confident that their disease will be treated going forwards. Next slide please. And so how did the delays affect what we as doctors as hematologists can can do for patients. Well, there is an effect in how we can deliver treatment sometimes so if a patient's diagnosis is delayed. And we can see that patients might be increasingly frail, and that can affect the types of treatment or the doses of treatment that we can use to treat myeloma. We've heard about the bone damage and accumulation of kind of new symptoms and pains that patients may go through, but some specifically for example damage to kidneys from myeloma can affect how we deliver treatment when we are at that point of starting treatment for patients in the myeloma clinic. And so, for me, how do we go about trying to improve all of that so we, and this is really supposed to kind of in a picture summarize the fact that I think as hematologists we need to kind of reach out and encompass on clinicians in the community and other clinicians within the hospital, as well as other people in the community and through efforts that like those that myeloma patients Europe are putting lots of effort into trying to increase education increase training and increase awareness of myeloma. But I think we also have to be aware that it remains a rare disease and however much we try to do that we need to perhaps think more broadly about whether there are other approaches we can take to try and take out some of the reliance on an individual person that a patient may see in a clinic. So are there ways we can use data putting together results of scans and blood tests in a more coherent way, rather than things being very separated. Or as I think Luke mentioned what can we think about ways that we can start to screen patients and that's something that's being studied in a couple of ongoing studies and we don't yet know whether that's likely to help improve things but these are really things that we're kind of trying to push forward to try and make sure that we're encompassing all of this when we think about addressing delayed diagnosis and trying to make sure that patients receive this life changing diagnosis as early as possible to enable us to deliver the best treatment that we can. Thank you. Thank you so much Dr. Pollen for sharing your thoughts and insights today as well as some of the recommendations. Our next speaker is Dr. Oliver Karen Filske from the University Clinic of hematology in Skopje, North Macedonia. Dr. Karen Filske. Good afternoon to all of you and I'm glad to be here if anything of what I say would help further manage these patients and bring some joy to their life as it is because we have heard these stories that a lot of problems surround the diagnosis and the patients. So what I'm supposed to talk about is why a timely diagnosis really matters in this situation. The main problem with the diagnosis multiple myeloma is that its manifestations are not specific. You heard the problems that the patients had. They do quite have similarities but also have some differences. So the main manifestation of myeloma by which it could be thought of as a serious disease is the anemia. But the problem with the anemia is that it's normocytic and normochromic which means the size of the erythrocytes of the red blood cells does not change and the color does not change. So this is initially suggestive maybe of blood loss or destruction of blood which is called hemolysis. This inevitably needs to the main problem with all the patients with myeloma that is fatigue, weakness, inability to perform as before. So this is not something that when you find a patient with anemia of like 95 grams you would say aha this is myeloma and this is a problem. Next there is the bone pain and the bone problems and everybody that first comes in contact with this kind of a patient would say is it's a rheumatic if the age fits. Is it something that you have done in your sleep or where you are working or you hit somewhere you hit yourself somewhere where you don't know. If it's a lady or an older person maybe osteoporosis would be the first guess and then maybe you broke your arm or leg or something and you don't even know it but that's what hurts. So this is also something that doesn't say you have myeloma you have a problem with your bones but this is still not indicative of only myeloma. Renal insufficiency is something that occurs in myeloma quite often but then it is a separate disease it can be acute it can be chronic it can lead to dialysis so someone would think that this is a renal disease. And then there is the thing with the hypercalcemia which needs urgent addressing and correction and that can be done but that still does not prove whether there is a supra renal problem or whether it's myeloma or everything and then. There is weight loss there is need there is a problem with the cognitive functions with communication with people with following activities and everything. And this is all not specific. So these things can occur in a wide variety of diseases and it doesn't say this is myeloma. So what can we do let's go to the other slide. First of all everybody that was saying something about myeloma is that we need to think of multiple myeloma as one of the options for these problems that are rising in our patients. We do education for the general practitioners and the family physicians on that level so that they should think about it. It's not really their duty to know all the problems that arise in myeloma, but they should know that it is one of the possibilities and pay attention to the science and the findings that can direct this patient to a proper specialist. In this sense, my opinion is that the GPs and the family physicians need to have availability to do a serum protein electrophoresis testing at every patient that they suspect that could be affected by multiple myeloma. Because this is a very basic analysis in biochemistry and it could direct the opinion towards myeloma because they're not as many diseases that have high levels of serum proteins, especially high levels of gamma global fraction of the protein level. If you have problems with the bones, your general physician should have some X-ray investigations, but the thing is these the diagnosis of myeloma request that you have the flat bones screened and that is the head, that is the pelvic bones and that is the vertebral column. And this is something you wouldn't do if a patient says that he or she has pain in the arm or the leg, maybe the leg would require the vertebral column, but not everything. And then if we have a reasonable doubt, this is very much a legal term, but if the doctor has reasonable doubt that maybe myeloma is what this patient has a prompt referral to a hematologist. I know that oncologists do hematology in many, many countries and centers, but this is still something that we have as a specific one of our specific diseases. And the prompt referral to a hematologist would speed up the process and come to the point of treatments. Can I have the next slide please. So what happens if the diagnosis is not set in due time? All of the parameters that I mentioned on slide one will worsen. They will not regress. They do not spontaneously regress. They will just go into further phase. Possible bone fractures which we call pathology because they occur under very small stimulus. It's not the proper reason for having a fracture. In this kind of patient it will occur. So it will further incapacitate the patient and if the fracture is in a very specific place in the vertebral column, it could also lead to plegic problems. Life-threatening hypercalcemia should be taken care of immediately and that does not require the diagnosis of myeloma. It should be taken care of regardless of the reason. Then the hyperviscosity, which is a problem dependent on the proteins level, will deter the cognitive, the intellectual functions and even the behavior towards other people. And that will maybe even suggest a neurological disorder which more complicates the diagnosis. Anemia will progress which will maybe require even transfusions and other lowering of the level of white blood cells and platelets would even bring the patient to a position where chemotherapy, which is essential for treating myeloma, is not going to be able to be delivered to the patient or maybe it will carry a bigger risk because further administration of chemotherapy could even worsen these findings. And then if we let the myeloma go on, there is the possibility that it will not respond to what we call standard first line initial treatment and that we need to do something that is more aggressive. And the last slide I think summarizes just about everything I have said. So whatever we do in the chain of health system is the one reason, managing white or finding a way how to manage this patient by the so-called correct specialist. It will bring the possibility of avoiding long term dialysis as a nephrological disease also to us, to the patient. It will bring, it will reach avoiding long term treatment for osteoporosis without any improvement arthritis or rheumatic disease also without any improvement. Cytopenias which will be devastating for initial treatment would be prevented. We would reach, when we have the diagnosis, a proper management and treatment plan, which is something a doctor does in the beginning. We will give bisphosphonates which will prevent, they will not revert, but they will prevent further bone destruction. So the patient will maintain mobility and a very good overall condition will be possible to do whatever he or she was doing until then. Which means we will be enabling self support rather than third party support. If the stage does not progress, if we give initial therapy in the first possibility, then we'll minimize the risk of stage progression. So we need to choose the first line treatment. If the risk is standard, then the initial treatment is standard. Serious incapacity, incapacitating complications which we heard of from the patients mainly will be minimized as will be the consequences of these complications. And not to be only addressing patients needs. The health system is going to minimize expenses because the earlier we diagnosed the multiple myeloma, the standard therapy and procedures will be performed and this will not take a huge chunk of the health system. What happens if we need to administer second and third line therapy? Also, if the patient is not incapacitated, he or she will not need to stay in hospital for treatment, but rather do this within the daycare units. So conditionally, because we're still talking about the malignant disease, it will enable a relatively normal living. There is the psychological moment, which is knowing that you're living with a malignant disease, but it is somewhat modern day magic that you can actually live with a malignant disease quite normally if you're diagnosed on time and you're giving treatment which does help also on time. Thank you very much. Thank you so much Dr. Paulin and Dr. Karen Filske for taking the time to present your experiences and observations with us and for all of the work that you do to help myeloma patients in your countries. Just a reminder if you have any questions for any of the speakers please put your questions in the chat box. And I'm excited to welcome our next guest, our colleague, Celine Tenseldum, research assistant at MPE, who will be presenting the findings from MPs early diagnosis research. Thank you, Katie. Yes, so hi everyone, I'm going to present to you the findings of the MP of the project MP conducted on the diagnosis of experiences of European myeloma patients and the perspectives of European hematologists. Next slide. So early diagnosis of myeloma has been shown to minimize disease complications and improve quality of life. However, the existing literature on myeloma highlights that patients experience delays, often due to non specific symptoms, lack of myeloma awareness and primary care, or other causes. And therefore to further explore these issues MP conducted a pan European study to capture patient diagnostic experiences, as well as the perspective from clinicians and gain also understand the impact of a later diagnosis and solutions on how we can improve diagnosis. So this project was split into two phases, the first being a survey and the second being focus groups and interviews, and the survey and focus group questions were designed by MP and informed by non systematic literature review. And the questions related to barriers to seeking medical help diagnosis timing impact of a late diagnosis and solutions on how to improve diagnosis. So as you can see in the table on the screen in total 628 patients and 80 hematologists completed the survey and 23 patients and six hematologists took part in the focus groups and interviews. Next slide please. So we started off looking at barriers to seeking medical help our survey found that approximately 51% of patients waited more than three or more months after onset of symptoms before seeking medical help. The focus groups highlighted that non specific symptoms GP so general practitioner practitioners shortages and health system related factors, such as getting appointments between private and public insured patients were some of the main reasons that held that patients main reasons for patients, not seeking medical medical help in the first place. So moving on to the initial presentation of symptoms, our survey found that most patients, 63% first presented with their symptoms or received abnormal blood results at their GP. 4014% of patients completed completing the survey presented at a secondary care department so, for example, hematology department or oncology department. However, 11% of patients first presented with their symptoms at an emergency hospital department. Next slide please. And looking at diagnosis timing our survey found that many patients were diagnosed within a month of consulting a healthcare professional. However, 24% of patients waited five months or more to get a diagnosis. And hematologists were slightly more optimistic than patients stating that 45% that it took 45% of patients less than a month to get diagnosed and 13% stating it takes five months or more. Next slide please. How many patients and clinicians how many specialists patients see before being diagnosed and how many medical consultations patients have in total before diagnosis, and the results showed that, although most patients so up to three different specialists, in primary care or in a renovate department or orthopedic department, 21% of patients sold for specialists or more before receiving a diagnosis. And 14% of hematologists stated their patients sold more than three specialists. Next slide please. In terms of the number of consultations 45% of patients stated they had more than three medical consultations and 22% had more than six and 38% of hematologists reported that their patients typically had three medical consultations and 31% stated they had four more. The, the views between patients and clinicians were fairly in line across the research. Next slide please. Our research also found that, although many patients believe that they had a timely diagnosis, approximately 34% of patients stated that that their diagnosis was delayed. And similarly 25% of clinicians described the timing of diagnosis in their country as delayed. And to understand to interpret the survey results, patients and hematologists were asked about how they might define delayed diagnosis in the focus groups. And most patients and hematologists agreed that a delayed diagnosis refers to the severity of symptoms and complications patients present with at diagnosis. So it is not about setting an arbitrary time point on a delay. They also agree that the misidentification of myeloma symptoms, the repeat presentation in primary care, and the referral to to wrong hospital depart departments, or negatively impacts on patient experiences and psychosocial well being. And this should be considered as part of the definition of a delayed diagnosis. Next slide please. So, our research, we also looked at asked in the focus groups about barriers to timely diagnosis. And our research found seven core themes from patients and hematologists contributing to delay diagnosis in myeloma, which are listed on on the slide. In the survey hematologists were specifically asked what they consider are the biggest barriers and results found that non specific, the non specific specificity of symptoms. The overlapping with common science of frailty and aging, the lack of GP awareness of myeloma, where some of the main reasons perceived behind the diagnosis delay amongst hematologists. For COVID-19 health system and access issues were also cited as by barriers to timely diagnosis, including disjointed healthcare systems, lack of coordinated care, and a lack of access to diagnostic tests and investigations. Next slide please. In this research, we also want to find out what the impact of a delayed diagnosis has on patients and the survey and focus groups highlighted six core themes. Patients and hematologists agreed that the impact of a delayed diagnosis can have significant long term symptoms and complicate complications. And the impact of these complications may also affect treatment options and survival. 45% of patients believed their diagnosis had a significant impact on their quality of life, affecting their ability to undertake daily activities, and many patients emotional well being were also impacted. However, we also the survey also highlighted the impact on carers and family members with 45% of patients who experienced a delayed diagnosis stating their delayed diagnosis had a significant impact on their families well being. And other aspects such as finances were also highlighted as a key topic in the focus groups. Next slide please. In conclusion, although many patients experience a timely diagnosis. In our research 34% of patients experienced a delayed diagnosis. And we highlighted that diagnosing a rare disease with non specific symptoms is challenging. And many barriers are faced when diagnosing myeloma such as disparities in access to testing, the availability of GP appointments, and over burdened and under resourced healthcare systems. However, we also highlighted that the impact of a delayed diagnosis can have. It can be detrimental for patients emotional well being. We also found that not only can symptoms complicate symptom complications, possibly have an impact on treatment options and responses. It can also have an impact on physical fitness, and it can also extend beyond the patient to affect family members and financial stability. A timely diagnosis can significantly improve patients quality of life. So thank you for listening to my presentation and in the second part of this event my colleague will discuss some of the recommendations and potential solutions to these challenges. And I think Linda just sent the link to to our report that we published on our website today. Thank you. Thank you so much for providing this overview of the research. As someone mentioned the link to the full report is in the chat box we encourage all of you to go to our website and read the full report and the experiences that we found through the survey results and the focus groups, as well as the interviews with the clinicians. We will now take a short five minute break so please be back here in five minutes, and we will hear from some additional colleagues about recommendations and actions to take forward as well as from some of our members about the work they're already doing to improve diagnosis in their countries and then we'll get to the Q&A so we'll see you back here in five minutes. Now we will move into the second part of today's event. So in the first hour we heard stories from patients experiences from doctors and the survey findings from NPE. And this gives us a picture of the challenges that patients face and obtaining a timely diagnosis. And now we will move into the second part of the event where we will talk about some recommendations and solutions and hear from members about the work they're doing in their country. And now I'm excited to turn it over to my colleague Kate Morgan had a policy and access that NPE who will present the recommendations from our research and the NPE diagnosis pathway. Kate. Hi everyone. As Katie said, I'm Kate Morgan and I'm head of policy and access here at NPE. And what I wanted to do for my presentation today was to go through the recommendations, actions and next steps that we have generated as part of the research that Salen presented before the break. Next slide please. So a core aim of the research was to really identify short and long term solutions for NPE, the wider patient community and doctors and nurses and other stakeholders to ensure that my loan of patients have a timely diagnosis. You can see the list of 10 recommendations that we've generated as part of our research. I won't go through all of them today but I think that you can categorize them broadly into four key areas. And importantly for this presentation and for the work that NPE is going to do over the coming years is GP awareness in education, such as diagnosis aids and European national referral guidelines were key themes that were generated from the interviews and literature reviews, also sort of more complex ways of predicting whether patients have myeloma through risk algorithms and that could potentially be used in in primary care. The second core theme is public health and campaigns to raise awareness, not of myeloma because we don't want to scare people with specific symptoms but thinking about how societies and policymakers can promote patient attendance at GPs if their health changes and that people don't off going there if they're worried about something. And secondly, I think in, we've touched a lot about this in the presentations but dialogue between different specialism so promoting dialogue between secondary and primary care, particularly if a patient has had a bad experience with diagnosis, and there may be teachable moments that we learned from that patient. And other things are about promoting dialogue between different departments and secondary care because we heard a lot about patients turning up at renal clinics or in orthopedics and then being sent back to primary care, whereas I think if we promote more dialogue between primary care and primary care, then we have a lot of health care departments. And fourthly, policy initiatives and this is very important. So how do we promote generation of data on diagnosis times and in access to diagnostic tests, not just in myeloma but in all cancers to make sure that appropriate initiatives are put in place to make sure that patients are diagnosed in time. Discussions around cancer plans and as a European beating cancer plan so how do we integrate the diagnosis strategies for rare and difficult to diagnose cancers within these because these are very important and they, they steer the direction of countries across Europe. Next slide please. So in terms of our next step so a really central theme from all of the discussions that we had with patients with doctors was the difficulty of GPS to recognize the signs and symptoms of myeloma because then on specific in myeloma is very rare and compared to other cancers. And so reminding doctors about this is potentially an effective approach. And it's not the GPS fault that they're not diagnosed on time and that's an important message. It's, it's very, very difficult that they have to be on top of a lot, a wide range of diseases. So how do we reach them with information about myeloma to make their job a bit easier. A lot of the discussions that we had with people within the qualitative interviews and with doctors and patients was around effective awareness campaigns that are actually already in place across Europe in countries like Denmark and Poland Croatia and the United Kingdom. And I think we need to make use of best practice in this in this regard and roll that out across Europe. Next slide please. So with that in mind, today we're really pleased to launch our European myeloma diagnosis pathway. And this is our new MPGP awareness campaign. And what we've done is we've created a diagnosis pathway that has been adapted from a myeloma UK diagnosis pathway with their mission. And we've had this reviewed by our MP medical advisory committee which involves myeloma experts from across Europe and updated it to make sure that it's applicable to all European countries. Our aim now is to disseminate this pathway and get it into the hands of as many GPs as possible over the coming years. And as well as disseminating it to GPs, we plan to send it to the commission and to the commissioner in charge of the beating cancer plan. And so they're aware of the campaign that we're running. Next slide please. Sorry, is there a slide missing? So in terms of, I think there was a slide missing, but what I was going to say is what we really want to happen with the diagnosis pathway is to work with our members and patients and carers industry to disseminate this within across Europe and within countries. And if an English pathway is acceptable to people, you could download it from the link that's displayed here and print it off and put it into the hands of your GP and encourage others to do the same. In addition, we would like to work with our members to potentially adapt this approach to be applicable within your country. And we could sit down with you and come up with a plan to ask local health care professionals about the applicability in your country and how we tailor it to the best effect to make sure that it fits the diagnostic path within your country. And then we can work with you to translate it and print off hard copies for your constituents to give to your members. And other things that we can help you with are as well as disseminating the pathway, we can help you with campaign materials such as press releases and writing to your, writing to your local politicians in anything to raise awareness of the disease of myeloma in the campaign and in getting it into the hands of GPS to raise awareness. So as I mentioned, you can download the pathway here. And if you'd like to be if you're interested in working with us on this, please just don't hesitate to get in contact with us at any point. Using the email address there and we can sit down with you and come up with a plan. Next slide please. And, yeah, so that's the slide. Could you skip it to the next slide. Finally, so in terms of next steps. And I think as well as in the short term raising awareness for the GPS. There's no quick fix for improving the diagnosis of myeloma so we'll be continuing this over the coming years. And our next plan is to engage with European professional societies to discuss potentially developing a more robust and specific learning module for GPS in collaboration with secondary care professionals and hematologists to make sure that it's as up to date and fit for purpose as possible. And this would, this would be aligned to CPD point so there would be incentives for GPS to participate. And finally, and in the longer longer term and people work to explore the more innovative solutions through our evidence generation programs such as developing risk algorithms or commissioning research to explore alternative ways of picking up myeloma in primary care. And one final point is as well as the myeloma diagnosis pathway which which you can download. And in the coming weeks, we are also creating an amelodosis pathway, which people can download as well and we're happy to work with people to, to, to adapt it and translate it as we are doing for the myeloma pathway. So thank you very much for listening to the research and hopefully we'll hear from you to work on the implementation of the pathway. Thank you so much Kate for presenting the pathway and how we can work with our members and the patient community on this. So our next presenters will be to MP members to talk about some of the programs that they have been running in their countries to help improve the time to diagnosis. Our first speaker is Olaf Yasne, Chairman of the Norwegian Blood Cancer Association. Olaf. Olaf you're on mute. Should I start the video as well. There we are. I guess to start the video first or not the video that you're going to show I just wanted to give a short intro. Sure. Okay. So thank you very much. I was, I started by thanking for inviting me thanking the speakers who have given a lot of good examples and emotional experiences. It's always useful and very interesting to listen and also facing that situation is not the same in all countries. It's certainly a little bit different from country to country what sort of challenges we're facing. And, and seeing the challenges we have seen is, is a common issue all over Europe in order to think how can we get the diagnose in place early as possible. So what should we do with the satisfaction for people who are feeling on well, having to go to doctors testing and never get a proper answer to the moment of starting treatment. The experience in a multiple myeloma in Norway is the biggest group of blood cancer patients. They experience when they finally get their clear answer that your diagnosis multiple myeloma treatment is going very good. And up to that moment. It's a lot of, a lot of difficulties, a lot of challenges, questions going to doctors going to new doctors going to get answers and uncertainty. What are the reasons for the symptoms that we're facing. We started in Norway to discuss this with the National Medical Association. That's the association of all medical doctors in the country. And they have a specific team, a specific group with employees working only with the GPS. The GPS is as I think it was Dr Pauline who said that patients and GPS usually see maximum one or two and multiple myeloma patients and diagnose them throughout their career. I think that's correct is brought me to say to doctors that if you ever are so happy from the doctors side that you managed to meet and multiple myeloma patient you should celebrate. The point is, they're not prepared for what really to look for. The important thing is that there are a lot of similarities between some leukemias and multiple myeloma. So doctors should be aware and they should get on the track very quick. And this is what we have discussed with the Medical Association and we have agreed a fairly light program. We face that doctors are receiving so much information, so much material, so much questions that a small complex. Multiple myeloma is complex, not only as a disease, but also as a very small diagnosed group. That's what we have to face. And it's not first on their mind. We also discussed it with the universities and university doctors if we should have more emphasize more focus on this during education. And we have been advised that this is not really what they're aiming for. The conclusion we made together with the Medical Association is that we simply are going to make some films. Short three-minute stories that can be used at all their meetings, locally and centrally, films that's raising their awareness. And what I want to do, we are just in the phase of finalizing the films. I will show you a film. It's a little bit in Norwegian, but it's good with some linguistic challenges as well. And it's only say 30-40 seconds into the film. I'd like you to see how we approach it. It's patience. There will be an intro by the medical doctor. And with that, it's just showing what sort of thinking we have around the films. I suggest you just start with the film. I don't know if you hear me now, but it's the long hand for a dangerous diagnosis. I got this diagnosis in January 2018. It had been quite a long time with some specific symptoms that something was wrong with my body.   And in the end, I was physically active. So after some time, I started looking for a way to find out what this was all about. I was sent to many different places in the beginning because I had some strange values when I was living. So I was sent to a control of living without finding anything very important to deal with. I also have a swimming community. This is the idea that we're working on, that we're bringing up patients telling their story. And she started telling that she started feeling exhausted, fatigued. She was active in sport with her dogs. And she was starting a round trip to be seen by a lot of doctors. Meet doctors and new doctors, new information, but nobody got to the point that what she could have. And I think that's an uncommon experience from what we are receiving from our members. It takes a long time to be diagnosed properly. And with these films, we will create films for all type of blood cancer over time. But films will be available then to be shared and used in common activities for all the medical doctors. It will of course be available online. It will be available online on their websites and it will pop up. Because the answer is actually very simple. The answer is if you are uncertain, if you think you could potentially have a patient in front of you that has multiple myeloma diagnosis, make the extended blood test. As soon as you make the extended blood test, I call it extended to simplify a little bit. But you don't need to have a specified detailed multiple myeloma test. So you do a screening test and you will have an answer that you need to work further with this patient and the patient should immediately be sent over to an hematologist. That's the only answer and the only suggestions we have to the doctors. I yesterday spoke with one of the GPs about it. It's not very common. It's in our mind not to do any mistakes, but it's so difficult with symptoms of multiple myeloma because it could be a lot of other issues. But push to take a thorough blood test whenever you are uncertain is the conclusion on all the films that we are sending out in the time to come. I think basically that's the main initiative we have. We are not doing anything of written material. We have written material available for patients, for doctors. We have seminars. We have a lot of sessions of activities. But it seems that talking to a lot of GPs and talking to their association, this small film clips is the reminder that they should be given. So that program has started and I hope it's going to work. So we get more medical doctors to take a quick initiative. It's important to have the diagnosis in place very quick. That's basically from Norway and the pictures you saw, the film you saw was not from Oslo. Snow has started coming, but not yet here. Thank you so much, Ola, for sharing the work that you are doing in Norway. And I'm excited to announce our next speaker, Mira Amor, patient advocate, co-founder and CEO of myeloma Croatia. Mira. Yes, hi everyone. Good afternoon and thank you very much for asking me to share our creation experience and our creation story. I think the previous speakers, patients and doctors and all of now I think we all share the same thread. And I will share with you what we did about our in Croatia. One of the slogans we developed through the last five years was what you see now and that's basically about multiple myeloma. It's early diagnosis, better prognosis. So can I have the first slide please. So we have managed in last four years, five years to go from 230 new diagnosis in a year to the latest information from our insurance fund is 330 diagnosis a year. The slogan we had is Rana Diagnosa Bola Prognosa. So early diagnosis, better prognosis and that goes through everything we do now in raising awareness. We did it in three stages which I'll share with you and first one is to understand the Croatian multiple myeloma environment where they live, work and get treatment. The second one is to share some of our campaigns and activities in since 2018 on raising awareness. And the third one is really to share how we got, how we get got on with our project of early diagnosis which is started in September 2020. Next slide. So understanding the Croatian multiple myeloma environment so our Croatian insurance fund publishes information on incidents prevalence mortality and when we first set off about it. We have. Okay, you're going ahead. So when we set out about it we had about you can see a 2016 it changes but it was going in between, I don't know, 200 in 2009 to 264 in 2016. But what we were looking at is what is important for our patients. And that is that the access to new drugs was very delayed. So when myeloma Croatian started was founded we were almost 10 years behind with approvals and reimbursement on the basic myeloma drugs like Bortezomibla and Alidamide and Alidamide. So in the period from 2014 to 19 we had great advances and we got Bortezomib in the first line, which was really very, very late in the life of the drug. So in myeloma we know that it's important to get access to drugs. The difficulties once you get to relapse and refractory stage, you have a problem. So next point, please. And the other thing which we have in Croatia, which is a small country with good treatment actually we had good access now relative to many countries in Europe is we don't have clinical trials and the last one we had registered was in 2015. And which was for Daratumumab. Sadly we didn't have any patients in role we had one or two enrolled. And that was at the time we when we didn't even have the other the second generation of novel drugs. So then the other problem next one please. The other really huge problem for small countries and I think Eastern European countries and Southern European countries is that we have very few pharma companies present in the country. Very few genetics companies are not interested in our countries. And if you go further down away from Croatia Croatia is in new EU so we are sort of okay. You have no presence of some of the pharma companies so you have no present that you can't get even the basic essential myeloma drugs. So this was why what was the reality next slide please. So the thought is okay we will work on access really digital diligently, but what we need to do is look at the other thing which is important for the outcome in multiple myeloma patients quality of life, the length of life and things and that's the, the fact that early diagnosis the is the other factor which is very important for the outcome. So since next bullet. So since March 2018 we started campaign, which is a monthly long campaign on awareness. And the first one was called one name 750 stories we heard two stories today one from Luke, and the other one from Severin we can see every single story is different. Next point please. So we thought of doing the sort of usual you do the infographics you do lots of Facebook. And media social media presence. We have carried on with this one name which is one name is multiple myeloma 750 stories in 2018 we had 750 patients alive in Croatia we estimated that we had 750 patients in Croatia. So we started collecting their stories. Next point please. And one of the stories is yelliness and her husband, even who was 43 and by fluke. He was diagnosed with multiple myeloma after having a terrible backache. He was pregnant with the second baby at that time and the story was really quite bad luckily he was diagnosed. So that was one of our stories we have lots of stories on our web page. Next point please. And then we created the slogan early diagnosis. Better prognosis next slide please. So, next point. So, in, apart from having activities during the March which is multiple myeloma awareness month we also every last Thursday in March, we have declared it. We have declared some international other other associations, patients associations as a multiple myeloma global myeloma day, and we have actually started campaigns our campaigns you can see them. Either panels or various campaigns on awareness. They have names like one name 750 stories or or early diagnosis and then as we go to 2021 we started a new project on early diagnosis. Next slide please. And we have been sure that every March on the last Thursday in the month, we have huge present in the media. So we have press releases we have our doctors and our patient organization present on TV radio shows in media, lots of newspaper articles. We have started. So we have launched. We have launched our next project in March, which was the Croatian diagnostic pathway. So next slide. This is a multi holder project. And it was divided in three stages. So we took time we started in September 2020. The first stage the second stage was in then from September to December 2020 and then the last one. The third one of the first part of this project because it's a long term project it's not going to stop now because every year we have new patients unfortunately, and we want to catch them early. So, from next slide please. So, in the first stage of this project we have organized virtual meeting. And next bullet point please. So this meeting was online because of COVID. And we have ensured that we have presence from all professional people who would be possibly important in the, in the early that diagnosis is happened on time. So multiple stakeholders in our case were next point please. And the next one maybe you can show all of them at the same time. So we had multiple stakeholders, we were looking at the problem we had, and we were also looking. And we presented various examples that we came across early diagnosis in Europe, and one of them was also Miloma UK diagnostic pathway, which we also looked at and then adopted in a way not adopted by, but adopted it to our creation reality. And of course we, we have asked for permission from Miloma UK in this. So next. So I'll, in the second. So, at that meeting we decided we have to have everyone involved, who's important so we had our organization which is Miloma Croatia. We had patients and carers, which had a story. We had two professionals associations of hematologist we in Croatia we have her what's called creation association of hematologist and then specifically cooperative or creation hematologist. We worked with both of those. And what was good with both. We worked with the family doctors and their association radiologist and Croatian Institute of Public Health. We have 20 people involved in this process next slide please. And we have decided to create a leaflet and a handout and I agree with all of that the GPS are very burdened with millions of diseases and millions of diagnosis. So what the first step is for us to create something we can hand out at the congresses and meetings, and this is our version of the diagnostic pathway we change the name if you look at this rock, basically that's crap, but in Croatian and it's very fortunate because the rock in Croatian is also a crab, the little creature. So, we have changed some of the things because some of the diagnostic things were not available in Croatia. I won't go over the what is important for Miloma we know what are the main, the main difficulties in diagnosis of multiple Miloma. Next slide. So, once we got this is the first stage so having diagnostic pathway was the first thing we've done, but then we needed to spread the word and we've decided to do it like reach everyone who can do anything regarding recognizing confirming and treating the disease. So, the first year after the March 21 when we have the awareness day and media campaign on the last Thursday in March, we have also had the presentation at the congress of family doctors with the rack or diagnostic pathway as we call it. And also we have a link here which maybe when anyone who is interested can have a look at, but basically there is a monthly publication of physicians, all physician in Croatia there is about 10,000 physicians who are members of this association. So, we included the leaflet on a hardboard in this publication. So, we were present also with handouts and now we are on the next stage of this project and that is to look at diagnostics because diagnostics are a huge difficulty in diagnosing Miloma properly. So, a simple diagnostic test like sedimentation, erythrocytes sedimentation rate which is cheap, and it's very available. And next slide is a picture of all of us on one of our campaigns for access, very successful one with our physicians here. So, we are very happy to share and take part in this because we feel that early diagnosis is something we can possibly do something impactful whilst the access seems to be very difficult work which we need to carry on doing but it seems to give results much slower. So, thank you very much for your time and including me in this. Thank you so much Mira and Olaf for sharing the impressive work that you're doing in your countries. We know that these are having a big impact for your community and we hope that they will inspire other member organizations and that you can continue to be a resource for the patient community. So, not too much time for questions but we will open up for questions. So, my first question is for both Dr pollen and Dr Karen filsky. How can we facilitate the collaboration across specialists in order to schedule complimentary assessment assessments quicker in parallel and not one after one. Dr Karen filsky would you like to begin. I'm going to give it ladies first but anyway, you first on my zoom. We do have cooperation it's it's not something that that should be a question I mean whenever we have a look at look at it from this side. I am a hematologist, I do get a patient that least with a reasonable suspicion having myeloma so what I would do is to do some corrections or if I need a radiologist to do some radiotherapy, or if I need a psychologist to maybe prevent any setbacks on behalf of the patient. I can call them whenever I need to but it is not a chain of of things that go one after another. The condition of the patient directs me to which help I need or the patient needs. So it's readily available. It's not, it's not that the question is how to jump through the channel of many specialists seeing the patient before the diagnosis. This is the problem. Once we have the reasonable suspicion, we have all cover all collaboration. Thanks, and Dr pollen. Yeah, I agree I think that the question is how to try and coordinate some of those initial visits between different specialist perhaps when the diagnosis is still uncertain and I guess the answer will be slightly different and different healthcare systems so it will depend whether there's people are all in the same hospital or some in the community perhaps some in a different hospital. I know there are efforts in the UK to try and link up hospital information systems between different hospitals and indeed back to the community as well so that you can access, for example, imaging reports, you know, it, a lot of patients say to me I want to, of course you could must be able to see a reports of a test I had in a different hospital. But actually that's not always the case if those things are not linked together or kind of actively sought out after sought after so I think some of these things are kind of systems based and more kind of problems with the healthcare system and how it's set up and but pushing for those things to be more joined up from from our end to try and make sure that that is fixed with potentially save investigations and patients having to repeat things. Thanks. So our next question is is kind of to everyone, both the patients, the hematologists and the members. We heard a lot about fatigue today as a major symptom to to getting the diagnosis is there. Do you have any thoughts on how we can help potential patients take fatigue more seriously in terms of going to their GP or GPs or specialists understanding this. What fatigue might mean for a patient and then taking the proper next steps. If anyone wants to jump in. I can do it, but it's not, it's not an easy question is something that is not specific to anything. I mean, you can be because it's your mentally exhausted you can feel fatigue if you have a serious disease you can feel fatigue so it's not a directing manifestation it's simply telling you something is wrong with me. So, seeing your general physician should be an obligation once you feel that something is not right. It was the same thing with COVID. You just feel that something is not right with you you don't know it's covered until you are tested but it was something. Yeah. I fully agree with you Oliver on your response but I was feeling when I went to my GP. As I mentioned during my presentation. Honestly, I was never sick or almost never lucky me. And what I found is sometimes they are not taking you or they were not taking me seriously. When I was saying that I was really suffering fatigue and so on. Even though I again I understand fatigue can can be everything and nothing so this I do agree, but the seriousness of my talk was not. Well perceived I would say this this was it was really how I felt when I was seeing some of the GP. So perhaps it's also due to the French way of doing things because we can go and see whomever we want almost. I do have a family GP so he was seeing me every time I had to so he knew how I was behaving and so on, but he didn't really interpreted fairly what I was telling him that was a point or nicely speaking, but I understand it's difficult. I totally understand you but there is a certain sentence that I tell people our outside of professional circles, the public perceives us as super humans. What we know professionally is a result of our learning and upgrading knowledge, but how we behave towards toward other people is something that we got from our mothers and fathers person and behaving and relation to people is something that is inside the human nature it's not a professional Good point, Luke. I can only agree with several in and doctor fatigue on its own is never will never be a symptom that will give a diagnose. It will just is in case it is related to other symptoms, which indicates the diagnose of myeloma, it will be recognized as such but never as on his own. In my case I, I felt all the period, the fatigue and I had to drag sometimes myself but I continue my normal life so who, who even myself I wasn't aware that something deeper or more serious was involved. You have a question about a screening test. Yes, there was a question earlier. I think a few of you mentioned the potential for screening tests, Charlotte or or Dr. Karen filsky if you'd like to elaborate I know show that was in part of your presentation. I will never recommend that every patient that enters a GPS office has this analysis but GPS should have access to this in my country they don't. They have access to sedimentation rate blood count renal function some enzymes liver enzymes serum iron. I believe I covered it just basic tests. So, if there is reasonable doubts in the language of of of advocates, then they should be able to use this. So if you find hyperproteinemia high level of seroproteins, and especially high level of gamma global is even before you diagnose what classes it or is it one class or two classes. It is a directional finding towards myeloma. The hematologist will will get rid of the necessary unnecessary results. And there are a couple of studies looking at whether or not screening more broadly would be helpful. So one is a study being carried out in Iceland where they're screening the whole population essentially for mgus initially and essentially for myeloma so the patients know they have mgus and then we will monitor more closely for general development of myeloma. The moment we don't have the outcome from that so the question is whether or not you unnecessarily alarm patients or lead to unnecessary intervention for patients who do not require it by doing something like that on that kind of scale. And so at the moment as Dr Karen Foskey said, you know, targeting diagnostic tests towards patients in whom there is a suspicion of myeloma is what I think most hematologists would agree is the right approach rather than the kind of blanket approach. There's an interesting study in the US looking at screening in just higher risk populations. So patients of black ethnicity, for example, to try and see whether that kind of targeted screening would be appropriate. But again, we don't have the results of that yet. Thanks. And unfortunately, the question and answer session was not long enough for us. I know there's a lot of questions that we didn't get to but in our follow up today with the links to all the information and the recording will try to provide answers to all the questions and writing and we've taken everything down. So, in order to be respectful of everyone's time. I just want to say a huge thank you to everyone for joining us today. This would not have been a successful event without all of your participation, and a special thanks to all of our presenters for sharing their experiences and perspectives today. So thanks to all of the things before we close MP is a wide range of communication assets, many of which are available and all of the member languages in Europe. You can find links to these in the chat box please go to our website to download the info graphics. Check out the videos and the other things from European myeloma day. If you have any questions about MP or the work that we do please get in touch with us at info at MP Europe.org. Stay more involved in the work that we do or receiving updates about our events. Please fill out the get involved form in the the link is in the chat box as well. And if you're particularly interested in supporting our research projects like the ones that you the ones that you heard about today we have several research projects ongoing and we continue to launch new projects to answer the most pressing questions for the patient community. So you can see, we have some projects on shared decision making CAR T cell therapy and al amyloidosis so you can find out more about those on our website or through the link. And, of course, please go to our website to read the full research report download the diagnosis pathway get in touch with us if you want to learn how it can be adapted for your country and how we can work together. As I mentioned, we'll send all this out by email in case you've missed anything in the chat, and just a huge thanks again for your participation and involvement. Today we couldn't do this without you and this is really just the beginning of our collective efforts to help improve the lives of those affected by myeloma. We hope today gave you some inspiration and motivation and most importantly some actionable next steps that we can take as a community. Thank you so much for being here and have a wonderful evening. Thank you.