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 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. EURORDIS is made up of almost 40 people based in our Paris, Brussels and Barcelona offices. EURORDIS' Board of Directors is composed of 12 rare disease patient organisation representatives from countries around Europe. Products & Services. Find out the latest news from the rare disease community! >> EURORDIS statements, sources of official information, and information/ activities organised in response to the pandemic. Find out how to become a EURORDIS Volunteer. Could you have the winning photo? EURORDIS-Rare Diseases Europe. Share your experience and tell us how of the COVID-19 pandemic is affecting you by completing this survey. To find out more about how you can join RareConnect, contact us. 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 has offices in Paris, France, Brussels, Belgium and Barcelona, Spain. Recognising the outstanding achievements and exceptional work of people making a difference for the rare disease community. “The too often long road to diagnosis presents one of the greatest challenges affecting the health, survival, well-being and indeed the very identity of people affected by a rare disease and their families,” Yann Le Cam, CEO of Eurordis-Rare Diseases Europe and Global Commission co … Basic details: The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. Rare 2030 prepares a better future for people living with a rare disease in Europe with foresight.” WHAT IS Rare 2030?. 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. 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. >> Rare Digital Disease Day 2021 - lots happening in Europe! 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. EURORDIS is present in several external institutions and organisations. 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. 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. Read about some of the early successes of Community Advisory Boards, bringing the patient voice into clinical research. 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. We comply with the HONcode standard for health trustworthy information. 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. Learn about our volunteers: Who they are? See the list. EURORDIS- Rare Diseases Europe, is a voluntary organization that is dedicated to improving the quality of life of all those affected by rare disorders. Discover the EURODIS network with its wide range of available distribution products and services throughout Europe. The Voice of Rare Disease 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 We comply with the HONcode standard for health trustworthy information. 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. Bringing together patients, families and experts to share experiences in a moderated multi-language forum. We are joining forces in 2021 to advocate for the adoption of a UN resolution on Rare Diseases. EURORDIS undertakes activities on behalf of its members, notably in favour of: Empowering rare disease patient groups Advocating rare diseases as a public health issue 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. European Conference on Rare Diseases - ECRD2020 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. ECRD is a EURORDIS initiative, List of the latest marketing authorisations and orphan medicinal products designations, EURORDIS Community Advisory Board (CAB) Programme, Activity reports, strategic approach and by-laws. Our members elect the Board. We are grateful for the financial support of the EURORDIS website by: Read EURORDIS recommendations for ERNs by 2030. Eurordis, which stands for the European Organization for Rare Diseases, is a nonprofit, patient-driven alliance of more than 930 rare disease patient organizations from 73 countries.Its goal is to improve the lives of people living with a rare disease in Europe. Please consider helping them. 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. In Europe 83% of rare disease patients' care was disrupted during the first wave of COVID-19 pandemic. EURORDIS- Rare Diseases Europe, is a voluntary organization that is dedicated to improving the quality of life of all those affected by rare disorders. EURORDIS is widely recognised in Europe for its achievements and as a main partner working with the European Commission, the European Parliament, the Council, the European Medicines Agency, and several others. 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. Join the newest RareConnect community for Warm Autoimmune Hemolytic Anemia (wAIHA)! 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. EURODIS is organisation representing patient groups across Europe. Watch and share the launch video of the HTx-project: personalised treatments and reimbursement policies through Artificial Intelligence and Real World Data. EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 800 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. The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. 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. EURORDIS-Rare Diseases Europe works across borders and diseases to improve the lives of people living with a rare disease. Submit it now! Tracking by collo barcode. 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. European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 online medical conference. Bringing together patients, families and experts to share experiences in a moderated multi-language forum. “The health of 30 million people living with a rare disease in Europe should not be left to luck or chance. What is their role? Rare Disease Day 2021 - join our digital events! Welcome to EURODIS, one of Europe’s leading combi-freight networks. Register now for the Rare 2030 Final Conference and the EURORDIS Black Pearl Awards! EURORDIS-Rare Diseases Europe. Read our key asks! 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. Stay tuned, registration will open on 7th January. Europe EURORDIS-Rare Diseases Europe City: Paris, Brussels, Barcelona Phone : +33156535210 EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 800 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. 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. Read the results from our COVID-19 survey now! Enter the 24-digit barcode to track your shipment throughout the EURODIS network: ‘You give us the strength to find cures' - Donations to AFM-Téléthon remain open. EURORDIS - European Rare Diseases Organisation Yesterday at 2:52 AM Last day to register for the IRDiRC Conference and RE(ACT) Congres ... s The event aims to bring together scientific leaders, patients, and policy makers to advance research on # rarediseases . Find out the latest news from the rare disease community! 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-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. The Rare Disease Day 2021 materials are ready for you to download, adapt and share with your story, your pictures and in your language! The session was part of the 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) — … How do they contribute? Patients in Europe. "Are you affected by a rare disease or a caring for someone affected by a rare disease? The EURORDIS Photo Award is open for submissions. 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