Advocating for Patients

EURORDIS NetworkingEURORDIS 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
  • 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

Page created: 31/10/2012
Page last updated: 27/09/2016
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect 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.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day 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 initiativeEuropean Conference on Rare Diseases