Our Achievements

 

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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 on Rare Diseases in 2008
  • Contribution to the adoption of the EU Council Recommendation on European Action for 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 EU Member States and other European countries
  • Contribution to the designation of over 1200 orphan drugs
  • Organisation of the European Conference on Rare Diseases and Orphan Products (ECRD)
  • Creation and coordination of the international campaign for Rare Disease Day

 

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, EUnetHTA and other stakeholders, including Orphanet, the European Federation of Pharmaceutical Industries and Associations (EFPIA),  the European Biopharmaceutical Enterprises (EBE), EuropaBio, and others.

EURORDIS received the Abbey S. Meyers Leadership Award of the National Organization for Rare Disorders in 2010.

Yann Le Cam and EURORDIS received the Drug Information Association President's Award for Outstanding Achievement in World Health in 2013.

Page created: 05/12/2012
Page last updated: 04/01/2017
 
 
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 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