EURORDIS Open Academy

Patients are experts on their diseases and have a valuable contribution to make to shaping meaningful rare disease research, policies and services.

Open Aademy alumni photo

By providing training, EURORDIS empowers patients and ensures they have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicines development with policy makers, industry and scientists.

EURORDIS also provides the link between training alumni and organisations such as the European Medicines Agency (EMA), where trained patients actively engage in many activities including scientific advice.

The EURORDIS Open Academy encompasses the EURORDIS Summer School, EURORDIS Winter School, EURORDIS Digital School and EURORDIS Leadership School.

The goal of the Open Academy is to build the capacity of rare disease patient advocates at large, as well as a select number of researchers and clinicians, so that they can go on to advocate for rare diseases at both local or international levels.

  • Open Academy programmes are taught in English, through a blend of online and face-to-face trainings, during which patients acquire an understanding of key concepts and terminology, take part in master classes, discuss case studies and benefit from peer-to-peer learning. The programmes aim to enhance the capacity of patient advocates so they can engage concretely in research, policies and services.
  • The Academy is characterised as open as all online training modules are also made freely available via this Website to anyone interested in building their capacities independently.
  • To take part in the face-to-face trainings, candidates proactively respond to a call for applications and successful candidates are selected by an application committee. Participation is co-funded by students and fellowships are provided by EURORDIS to guarantee equal opportunities.
  • EURORDIS also nurtures a continued relationship with Open Academy alumni through exchange of information and experiences, peer-to-peer support and regular webinars.

The EURORDIS Open Academy operates independently, ensuring there is no conflict of interest in the programme design, content, faculty or funding mechanisms.


If you have any questions about the EURORDIS Open Academy please contact:

Sharon Ashton

Open Academy Director