For some people with hemophilia, even the simplest of daily tasks can be challenging. Hemophilia is a serious, inherited bleeding disorder in which a person’s blood doesn’t clot properly, leading in severe cases to uncontrolled bleeding, either spontaneously or after minor trauma. While a person with hemophilia may not bleed more or faster than a person without it, they bleed for a longer period of time, and the recurrent bleeds can lead to significant impairment, especially in their joints. Hemophilia A is the most common type of hemophilia, affecting around 3,000 Canadians and approximately 320,000 people worldwide.

As a company committed to addressing unmet medical needs and improving the quality of life of patients, we know that the patient community is a powerful ally in helping us understand disease and the everyday challenges that come along with it. To that end, we have created ReDefine Hemophilia, an online forum that allows the Canadian hemophilia community to come together, spark conversation, inspire, encourage and motivate those living with the disorder to redefine their goals, aspirations and what it is really like to live with hemophilia.

ReDefine Hemophilia recognizes the individuality of people living with this disorder, offering a unique online space for people within the community to connect, while educating themselves and their caregivers about what matters most to them and to those around them. Patients often live in a state of acceptance and compromise around the limitations that hemophilia has brought to their lives. ReDefine Hemophilia calls out these daily compromises, challenges acceptance, celebrates successes, and enables conversations around goals and aspirations. It allows those within the hemophilia community to communicate about their disorder in their own unique way, to proactively demand more from their lives.

Visitors to the website are encouraged to generate a meme that demonstrates their daily challenges with the condition using #ReDefineHemophilia as a way to tell their story on social media. Memes that have been submitted will be showcased in the Memeophilia gallery and can be shared using social media. ReDefine Hemophilia also contains helpful information and tips on topics faced by hemophilia patients in their daily lives, and will be updated to include topics like pain management, mental health, exercise, travel, and managing bleeds.

With advancements in the treatment space, life with hemophilia does not need to be so limiting. Sharing with others in the online community can offer people with hemophilia the realization that life with the condition doesn’t have to remain the same.


October 28, 2019

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