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Eurordis - Rare Disease Europe


722 alumni & 3650 people taking online training

Alumni from 51 countries

99% alumni recommend our training



Meet our alumni

Through the Open Academy capacity-building programmes, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicines development.

Open Academy alumni engage in these discussions as equal partners, side by side with policy makers, industry and scientists, to effectively improve care, treatment and the lives of persons living with a rare disease.

The impact of the EURORDIS Open Academy is far reaching and significant, with participants being highly satisfied and seeing the programmes as an effective tool to build their capacity and knowledge.

Furthermore, the Open Academy alumni are effectively using the knowledge and skills that they have gained through the training in their activities as patient advocates to represent their specific rare disease communities and the rare disease community at large.

What do our alumni say about the Open Academy

“The knowledge I’ve gained from the Open Academy has been useful for me in every aspect of my patient advocate role: in the Community Advisory Boards, in the Drug Information, Transparency and Access (DITA) Task Force, building a survey on Quality of Life, identifying endpoints on a clinical trial and in daily activities within my European Reference Network. I have a deeper knowledge now and I also met a network of people I can count on.”

Ilaria Galetti, Federation of European Scleroderma Associations, Italy

How alumni use their training


  • Successfully advocate for national healthcare systems to fund rare disease treatments
  • Reach out to research groups working in the field of their rare disease with the aim to co-design or jointly submit proposals for research projects, ensuring the project meets the needs and priorities of the patients
  • Register as a patient expert and participate in activities in the European medicines Agency (EMA) such as protocol assistance and scientific
  • Find academics, clinicians, and/or private partners to drive forward a  therapeutic development such as repurposing an existing product
  • Contribute to Health Technology Assessment (HTA) on a regional/national level
  • Be involved in an ethics committee in local hospitals or on a regional or national level
  • Participate in or set-up a disease specific CAB (Community advisory board) to help design clinical trials and identify the most relevant end points for patients
  • Disseminate the knowledge gained through the schools within their organisation and continue to share experiences and best practices with
    alumni and other patient organisations
  • Use the information to maximise their own advocacy and support work

Useful resources for the Open Academy Alumni.

Contact the Open Academy Team

For more information, please contact

Rachel Butcher, Open Academy Manager - Training Coordinator