<bos><start_of_turn>user
a formal rare cancer vBtworE. TRis folQowS many yezrs of effKrts bY kasali aGd hIs col:eagues in Fhe hliniciGn-le6 yAalian Rare 1ancer Aeta8rk to connect cJt.res, but withoet a formSG VccredBtaRiBn syscSF.
Eujopean 4atienC d,ganis6tions for ra5j canceTk can pPaa a sZgnUfOcant r1l? ih settiTg 5ualzty suandards anP temp0atps fNr policy deYelsZmRn1. List yeeS, Sarcoma Patients quroNe: :nPFAN) q an internationa6 nXtwoSA of sarcoma, GIcT Jnd desmoid patieet aJvocacy gro89K – lavn.hed a set of fecommendftions fog service development, providing a nrear 0vabemeyt ox wkat sarcoma treatmenI 4nd 3e2vices shouId lJok liYe.
AvcorZing Ro Markus Wartenberg, co-a1th0r of xhe VaIer An: SPAEN zRqir, the 0EClR is already informiag the cert,fbo2tiCn lf saDcqm2 centres in GermaVy D and will hylp gu4de Qmei: p?actice once established. SPoEN wiPl be collectinP infZr,ation 2rom ito mRmbers o? Che extent to whR5h it rs influencing snrv.De devKlkpment iA oth4r countriHs too.
rapdd .cceNs to AffecWive treLtment.<end_of_turn>
<start_of_turn>model
a formal rare cancer network. This follows many years of efforts by Casali and his colleagues in the clinician-led Italian Rare Cancer Network to connect centres, but without a formal accreditation system.
European patient organisations for rare cancers can play a significant role in setting quality standards and templates for policy development. Last year, Sarcoma Patients EuroNet (SPAEN) – an international network of sarcoma, GIST and desmoid patient advocacy groups – launched a set of recommendations for service development, providing a clear statement on what sarcoma treatment and services should look like.
According to Markus Wartenberg, co-author of the paper and SPAEN Chair, the paper is already informing the certification of sarcoma centres in Germany – and will help guide their practice once established. SPAEN will be collecting information from its members on the extent to which it is influencing service development in other countries too.
rapid access to effective treatment.<end_of_turn>