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The EURORDIS Open Academy: empowering patients to be valued partners

July 2019

Participants at the EURORDIS Summer School 2019

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 people affected by a rare disease.

Alumni Denica Velkovska has just seen her national health care system in North Macedonia authorise funding for a treatment for all patients up to the age of 18 with spinal muscular atrophy, the same rare disease her 10-year-old son is living with. She spoke of her experience, “The Summer School gave me the pieces of the puzzle I was missing or reassured any doubts I had. I learnt a lot about the relevant regulations and also the true power that patients can have to advocate. For a long time, we had had problems accessing the treatment my son needed. The knowledge I gained at the Summer School helped me see how to proceed in my advocacy efforts in the best way possible and helped me influence change.”

She continued, “Empowered by the lessons I learnt and advice I received at the training, I changed my approach to the authorities and decision makers. I also really learnt the benefit of networking, sharing experiences and tight collaboration within the rare disease community. I was very grateful to be mentored by a member of the EURORDIS alumni and am now honoured to be alumni myself.”

The EURORDIS Open Academy trains over 150 patient advocates a year. It encompasses all EURORDIS capacity-building programmes: the EURORDIS Summer School, created in 2008, and newer trainings the Winter School, Digital School and Leadership School.

These are provided through a blended learning made up of face-to-face trainings and e-learning modules.

Apply to the EURORDIS Winter School 2020!

Applications are open for the third edition of the face-to-face training of the EURORDIS Winter School on Scientific Innovation & Translational Research, which will take place on 9-13 March 2020 at the Imagine Institute in Paris.

This training aims to deepen patient advocates’ understanding and knowledge of how pre-clinical research translates into real benefits for rare disease patients. Winter School alumni are empowered to effectively participate in discussions with the researchers, policy makers and companies responsible for research. 

>> Apply by 30 August to participate in the EURORDIS Winter School 2020

Join the Open Academy to participate in free e-learning modules

To ensure the Open Academy is accessible to patient advocates around the world, EURORDIS is developing an e-learning platform that currently includes over 50 courses on the topics of medicines R&D, translational research and scientific innovation. All courses are taught by Open Academy faculty members who are recognised experts in their fields.

>> Sign up to the Open Academy e-leaning to join the over 650 people from 100 countries who have already taken the online courses.

Upcoming face-to-face trainings

  • The first face-to-face training of the new EURORDIS Digital School on Social & Digital Media will be held in Gothenburg, Sweden from 8-9 October 2019 at the Ågrenska resource centre. This innovative training aims to empower 25 rare disease and rare cancer patient advocates with the skills needed to use digital communication tools to improve the strategic outreach and community-building capacities of their organisations. Applications ran from May to June and the results will be communicated to applicants in July.
  • The EURORDIS Leadership School launched in March 2019 to provide ePAG (European Patient Advocacy Group) advocates with the knowledge and expert skills needed to be valued partners in European Reference Networks (ERNs). 20 Leadership School webinars are taking place over the course of 2019 while the first face-to-face training will take place in November in Barcelona (applications are already complete for 2019). Nearly 60 patient representatives representing 21 ERNs are attending this training to learn more about leadership, network management, healthcare and research.

Questions on the Open Academy? Contact Raquel Castro, Open Academy Director:

Eva Bearryman, Communications Manager, EURORDIS-Rare Diseases Europe