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.

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

The EURORDIS Open Academy encompasses the EURORDIS Summer School, EURORDIS Winter School, EURORDIS Digital School and ePAG Capacity-Building Programme.

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.

  • Open Academy programmes are taught primarily 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. All Open Academy programmes are also moving towards offering accreditation to participants.
  • The Academy is characterised as open as all online training modules are also made freely available via the EURORDIS Website to anyone interested in building their capacities independently. As well as patients, each programme is open to a selected number of professionals such as medical and social researchers, clinicians and partners in digital projects. Some programmes are also open to international participants or non-rare disease participants.
  • To take part in the on-site 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 then fellowships are provided by EURORDIS to guarantee equal opportunity.
  • 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.



EURORDIS Summer School

Since its launch in 2008, the EURORDIS Summer School has taken place every year in Barcelona.One week of on-site training is coupled with 7 modules of online training (available for free to anyone) . The training aims to provide both patients and researchers with the knowledge and skills needed to become experts in medicines research and development. Over 20 EURORDIS Summer School trainers provide the training each year.
To date more than 400 participants from over 40 countries representing more than 75 diseases have participated. Thanks to connections provided by EURORDIS, alumni members have gone on to become members of committees at the EMA and participate in activities related to the European Network of HTA agencies (EUnetHTA). 

Learn more about the EURORDIS Summer School and complete free online modules on topics  including:

  •  Medical research
  •  Ethics
  •  The regulatory framework
  •  The European Medicines Agency (EMA)
  •  Benefit-risk assessment and pharmacovigilance
  •  Market access.




EURORDIS Summer School Spanish Editionspanishsummerschool_0.jpg


A Spanish edition of the Summer School also launched in 2017. Strong interest from Spanish-speaking patient representatives led to the organisation of a Spanish version held in parallel to the English-language version. Its first edition welcomed 43 participants from many regions of Spain as well as Central and South America.




EURORDIS Winter School

New in 2018, the EURORDIS Winter School on Scientific Innovation and Translational Research aims to deepen participants understanding of how pre-clinical research translates into real benefits for patients.

The first edition of the on-site training will take place in March in Paris. The programme will cover topics including the history of genetics, diagnostics and drug repurposing. The online component of the training will be made freely available for anyone to use online.



EURORDIS Digital School

The EURORDIS Digital School will launch in 2019. Made up of online webinars and two in-person sessions per year, the Digital School provides up to 25 participants (representing rare and non-rare diseases) with training on how to use social media to raise the profile of a patient organisation, as well as practical advice on how to develop an awareness-raising campaign.



ePAG Capacity-Building Programme


The European Patient Advocacy Groups (ePAGs) were set up by EURORDIS to ensure the patient voice is present in the development of the European Reference Networks (ERNs).
EURORDIS runs a capacity-building programme for the over 200 ePAG representatives, with a focus on three levels:

  1.  ePAG representatives who voice the views of their ePAG’s wider membership to their respective ERN Board;
  2.  ePAG representatives involved in ERN topic groups; and
  3.  All 200+ ePAG representatives who are involved in the 24 ERNs.

For more information please contact

Nancy Hamilton


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








Page created: 15/01/2018
Page last updated: 04/07/2019
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