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Our History



The first-ever fully virtual European Conference on Rare Diseases & Orphan Products (ECRD) takes place, bringing together a record 1,500 registered participants.



  • EURORDIS launched the EURORDIS Open Academy consolidating all of EURORDIS’ training activities and the first edition of the EURORDIS Winter School on Scientific Innovation and Translational Research takes place in Paris.
  • The launch of the new EURORDIS EUROCAB Programme to facilitate the creation of community advisory boards.
  • EURORDIS and resource centres for rare diseases gather in the new European Network of Resource Centres for Rare Diseases – RareResourceNet.
  • EURORDIS is granted Special Consultative Status with the United Nations Economic and Social Council (ECOSOC), paving the way for our efforts to advocate for rare diseases to become an international health priority.

  • EURORDIS celebrates its 20th birthday and the 10th edition of Rare Disease Day.
  • After years of advocacy efforts by EURORDIS and the rare disease community, the European Commission launched the first European Reference Networks.
  • EURORDIS launched a new network of Parliamentary Advocates for Rare Diseases.

  • EURORDIS and the Ågrenska Foundation launch the NGO Committee for Rare Diseases, a substantive committee established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations. The NGO Committee was inaugurated in November 2016 at the ‘Global Gathering for Rare Diseases’ event at the headquarters of the UN (New York), the first event focused on rare diseases to be held at the UN.
  • In anticipation of the launch of the European Reference Networks (2017), EURORDIS creates European Patient Advocacy Groups (ePAGs) to structure representation of the patient voice in the development and governance of the future Networks.


  • EURORDIS welcomes its 500th member!
  • The first EURORDIS Black Pearl Dinner takes place in Brussels, including the first EURORDIS Black Pearl Awards ceremony.

  • Creation of IRDiRC, the International Rare Diseases Research Consortium. EURORDIS played an instrumental role in its creation and in representing the patient voice in the Consortium.

  • EURORDIS supports national alliances around Europe to organise the first EUROPLAN conferences.
  • Creation of the first EU Committee of Experts on Rare Diseases (EUCERD), including eight patient representatives as members, several of which representing EURORDIS.

  • Launch of the EURORDIS Council of European Federations (CEF).
  • EURORDIS forms its first international partnership by signing a Memorandum of Understanding with the US National Organization for Rare Disorders (NORD) for a 5-year strategic partnership.
  • EURORDIS and other partners in the RAPSODY Project create the European Network of Rare Disease Help Lines.
  • EURORDIS launches RareConnect, the online platform where rare disease patients, families and patient organisations develop online communities and conversations across continents and languages.
  • Publication of the book The Voice of 12,000 Patients, a report based on the EurordisCare2 and EurordisCare3 surveys


  • Launch of the EURORDIS Council of National Alliances (CNA).


  • The first EURORDIS Membership Meeting takes place in Barcelona.


  • Yann Le Cam becomes Chief Executive Officer of EURORDIS.
  • Patient representatives including EURORDIS Chief Executive Officer Yann Le Cam are appointed for the first time as full members in a European Medicines Agency committee – the Committee for Orphan Medicinal Products.

Following advocacy efforts by EURORDIS and the wider rare disease community to bring into place legislation in Europe that mirrored the success of the Orphan Drug Act in the US (1983), the EU Regulation on orphan medicinal products is adopted.  

EURORDIS went on to play an instrumental role in advocacy efforts that led to the adoption of numerous EU legislations that have a positive impact on people living with a rare disease in Europe:

  • EU Regulation on medicinal products for paediatric use (2006)
  • EU Regulation on advanced therapy medicinal products (2007)
  • EU Commission Communication Rare Diseases: Europe’s Challenges (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).

EURORDIS-Rare Diseases Europe was created in 1997 by four founding members: the Association Française contre les Myopathies, AIDES Fédération Nationale, Vaincre La Mucoviscidose and La Ligue Nationale Contre le Cancer. Our original goal was to advocate for EU laws to bring medicines to people living with a rare disease.