- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- 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
- Get involved
- News & Events
Advocating for Patients
EURORDIS represents 30 million patients affected by over 5000 distinct rare diseases and advocates within the European Commission and other European institutions for policies that address the needs of patients and their families.
Some of our achievements
- Contribution to the adoption of the EU Regulation on Orphan Medicinal Products in 1999
- Contribution to the adoption of the EU Regulation on Paediatric Drugs in 2006
- Contribution to the adoption of the EU Regulation on Advanced Therapy Medicinal Products in 2007
- Contribution to the adoption of the EU Commission Communication Rare Diseases: Europe's Challenges in 2008
- Contribution to the adoption of the EU Council Recommendation on a European action in the field of rare diseases in 2009
- Contribution to the adoption of the EU Directive on Patients’ Right to Cross-Border Healthcare in 2011
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Contribution to the promotion and maintenance of rare diseases as:
EU Public Health Policy priority
EU Research Framework Programme priority - Promotion of National Plans and Strategies on Rare Diseases in all 28 EU Member States and other European countries
- Contribution to the designation of over 1100 orphan drugs
- Organisation of the European Conferences on Rare Diseases (ECRD)
- Organisation of the International Rare Disease Day
Find out the latest news from the rare disease community! 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
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