Rare Disease PoliciesEURORDIS takes an active role in rare disease related regulatory processes and has made key contributions toward the development and adoption of important rare disease and orphan medicines policies at the European level, including the:

  • EU Regulation on Orphan Drugs (1999),
  • EU Regulation on Paediatric Drugs (2006),
  • EU Regulation on Advanced Therapy Medicinal Products (2007),
  • EU Commission Communication on Rare Diseases (2008),
  • EU Council Recommendation on a European Action in the Field of Rare Diseases (2009),
  • EU Directive on Patients’ Right to Cross-Border Healthcare (2011),
  • the promotion and maintenance of rare diseases as an EU Public Health Policy priority and EU Research Framework Programme priority,
  • various policy processes within the European Medicines Agency.

By partnering with rare disease national alliances in many EU countries, EURORDIS also impacts the national processes toward developing and implementing national plans or strategies for rare diseases.


Learn more about the health policy areas in which EURORDIS is involved


Page created: 06/08/2013
Page last updated: 06/11/2014
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. 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