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September 2021

EURORDIS Charter for Clinical Trials 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 the EuroCAB Programme here.

Principles of the Charter:

  1. The 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
Bibian Verstegen

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.