Products & Services. 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. EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 949 rare disease patient organisations from 73 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. The voice of rare disease patients in Europe The international voice of people living with rare diseases Bringing together patients, families and experts to share experiences in a moderated multi-language forum. EURORDIS' Board of Directors is composed of 12 rare disease patient organisation representatives from countries around Europe. Register now for the Rare 2030 Final Conference and the EURORDIS Black Pearl Awards! By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. Read our key asks! ECRD is a EURORDIS initiative, List of the latest marketing authorisations and orphan medicinal products designations, EURORDIS Community Advisory Board (CAB) Programme, >>Newborn Screening: for a better life with a rare disease, >> Share, care, cure: our vision for mature European Reference Networks. EURORDIS- Rare Diseases Europe, is a voluntary organization that is dedicated to improving the quality of life of all those affected by rare disorders. Join the newest RareConnect community for Warm Autoimmune Hemolytic Anemia (wAIHA)! EURORDIS - The Voice of Rare Disease Patients in Europe Rare diseases in the arts If you know about a film, book or event that features a rare disease that could be added to this page please contact anja.helm@eurordis.org Rare diseases in art The ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 800 rare disease organisations, from more than 70 countries, that Work together to improve the lives of the 30 million people living with a rare disease in Europe. Welcome to EURODIS, one of Europe’s leading combi-freight networks. Tracking by collo barcode. Find out the latest news from the rare disease community! We comply with the HONcode standard for health trustworthy information. The voice of rare disease patients in Europe The international voice of people living with rare diseases Bringing together patients, families and experts to share experiences in a moderated multi-language forum. EURORDIS-Rare Diseases Europe is a non-profit alliance of over 900 rare disease patient organizations from 72 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. The European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases, that promotes research on rare diseases and commercial development of orphan drugs.EURORDIS is dedicated to improving the quality of life of all people living with rare diseases in Europe. Could you have the winning photo? EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 800 rare disease patient organisations from more than 60 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. The 10th edition of the EURORDIS Black Pearl Awards will take place fully online on 24th February 2021, from 17:00 CET.. You will be able to join the event free of charge from all over the world! EURORDIS is present in several external institutions and organisations. Eurordis European patient group for rare disease Author: Michele Lipucci di Paola Subject: Prevention and control of viral hepatitis, The role and impact of liver patient groups and advocacy groups in and outside Europe, Lucca, Italy, 13-14 March 2008 Keywords: Eurodis,Liver Patient groups,rare diseases, VHPB Meeting, Lucca 2008 Created Date In Europe 83% of rare disease patients' care was disrupted during the first wave of COVID-19 pandemic. See the list. 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