Titre:eurordis - the voice of rare disease patients in europe
La description :eurordis - rare diseases europe, is a non-governmental patient-driven alliance of rare disease patient organisations representing 808 rare diseases patient organisations in 70 countries. we are dedica...
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Ce rapport est mis à jour en 20-Jul-2018
Created Date:
2000-11-23
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eurordis tv contact us the voice of rare disease patients in europe donate about eurordis who we are what we do international activities membership library our funding donate contact us about rare diseases what is a rare disease? find information or help a public health priority undiagnosed rare diseases rare disease policy eu rare disease policy national rare disease policy international policy fact sheets decide rare barometer programme orphan drugs & treatments what is an orphan drug? improve the safety of your medicines compassionate use role of eurordis patient advocates involvement access to orphan drugs health technology assessment eurordis round table of companies (ertc) list of the latest marketing authorisations and orphan medicinal products designations living with a rare disease services & trainings eurordis open academy specialised social services rareconnect help line services eurordis community advisory board (cab) programme get involved individuals patient groups companies news & events eurordis events members’ news and announcements international rare disease events rare diseases in the arts eurordis webinars eurordis press releases enews home languages en fr de es it pt ru apply for the eurordis winter school 2019! the eurordis eurocab programme nominate a star! veronica’s story >> apply for the eurordis winter school on scientific innovation & translational research >> create a community advisory board for your disease >> nominate a rare disease star for a eurordis black pearl award >> living with allan-herndon-dudley syndrome get involved take part in online training via the eurordis open academy -- read more... featured event register for october workshop on how patients and researchers can work together through community advisory boards -- read more... international 2nd x-linked hypophosphataemic rickets symposium, 26 september, greece -- read more... patients and services rareresourcenet is a network of rare disease resource centres aiming to advance integrated care -- read more... actions join rare barometer voices, the eurordis survey initiative! -- read more... member's corner 47th annual general assembly of the european alliance of neuromuscular disorders associations, 20 - 23 september, czech republic -- read more... rareconnect.org online communities subtitle article -- rareconnect.org, together with the world's leading rare disease patient groups, offering global online communities allowing people to connect around issues which affect them while living with a rare disease. new online community for people living with mepan syndrome, a neurometabolic disorder to find out more about how you can join rareconnect, contact us . who we are eurordis-rare diseases europe is a unique, non-profit alliance of 808 rare disease patient organisations from 70 countries that work together to improve the lives of the 30 million people living with a rare disease in europe. our members our mission statement search for: rare disease day 2016 eurordis coordinates rare disease day. check out the events happening around the world! -- ecrd 2014 see the twitter feed of ecrd 2014 berlin. -- eurordis awards 2019 nominate a star of the rare disease community! nominations for the eurordis black pearl awards 2019 are now open until 20 august. it is an opportunity to honour the outstanding efforts of individuals and organisations across the rare disease community. eurordis tv watch eurordis tv's video of the week! aniridia: my story social media tweets by @eurordis -- news find out the latest news from the rare disease community! language english french german spanish italian portuguese russian subscribe eurordis.org at a glance about eurordis about rare diseases rare disease policy orphan drugs & treatments living with a rare disease services & trainings get involved news & events eurordis tv contact us privacy policy cookie policy conditions of use about this website editorial board we comply with the honcode standard for health trustworthy information we are grateful for the financial support of the eurordis website by: this website received funding under an operating grant from the european union’s health programme (2014-2020) the voice of rare disease patients in europe the international voice of people living with rare diseases, rare diseases international is a eurordis initiative bringing together patients, families and experts to share experiences in a moderated multilanguage forum, rareconnect is a eurordis initiative the rare barometer programme is a eurordis initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers. an international awareness raising campaign taking place on the last day of february each year, rare disease day is a eurordis initiative join the largest gathering of rare disease stakeholders across europe, at the biennial european conference on rare diseases and orphan products. ecrd is a eurordis initiative
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