EURORDIS Charter for Collaboration in Clinical Research in Rare Diseases

The "EURORDIS Charter for Collaboration in Clinical Research in Rare Diseases" aims at improving the quality of clinical research in rare diseases and at enhancing a transparent and effective dialogue between sponsors and patient organisations.

Eurordis urges all member companies to sign the Charter, especially when beginning or carrying out  research activities. Please read more about our EuroCAB Programme here.


Principles of the Charter:

  1. Bibian VerstegenThe Charter is an expression of mutual intentions and aspirations
  2. The Charter is not legally binding
  3. The collaboration is based on respect and is not tokenistic
  4. The CAB is recognized as an independent body and is not structurally dependent on the sponsor
  5. The work and the structure are transparent
  6. Agendas are cooperatively designed
  7. The dialogue is meaningful and of high quality
  8. Collaboration between the sponsors and the CAB is timely, where input can make a difference
  9. Confidentiality is respected by both sides
  10. The collaboration is based on trust
  11. All interactions are considered non-promotional


The below companies have signed the revised version (2019) of the Charter:

  • Actelion
  • Asklepios BioPharmaceutical
  • Boehringer Ingelheim
  • Cytokinetics
  • Ipsen
  • Lysogene
  • OP2 Drugs
  • OpenApp
  • Sangamo
  • Sarepta Therapeutics
  • Translate Bio
  • Vertex
  • Vifor Pharma
  • VOZ Advisors

The following companies signed the previous version of the charter: Actelion, Beta Innov, Boehringer Ingelheim, Chiesi, CSL Behring, Johnson & Johnson, Novartis Oncology, Roche, Sobi, Takeda and Vertex.

Along with the Charter, an non-confidential working Memorandum of Understanding between the patient organisation and the sponsor will be agreed upon for each research project. Accompanying this will be a confidential milestones plan on how to achieve the MoU with specific work and dates.

research into rare diseases | la recherche | la investigación en enfermedades raras | la ricerca | investigação | Forschung


EURORDIS offers to help patient organisations work closer with research sponsors, and to assist sponsors and patient organisations in setting up their collaboration, including issues around governance of the CAB, administration, and training.

For more information on the EURORDIS Charter for Collaboration in Clinical Research in Rare Diseases, you can contact: or



Graphics: © Eurordis
Photos: researcher © Pan American Health Organization ;
Bibian Verstegen © Jose Verstegen-Ruijs / Stichting voor AfweerStoornissen - (SAS)

Page created: 19/08/2009
Page last updated: 27/09/2021
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