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Eurordis - Rare Disease Europe

Open Academy Schools 2023


The 2023 edition of the Open Academy Schools will take place in-person from 19-23 June in Barcelona. Schools are delivered in English in a blended format, comprising e-learning modules, pre-training webinars and face-to-face intensive days. Following a review of our training offerings, we are excited to announce a new format for our in-person training.

From 2023, the face-to-face intensive week of the Open Academy School on Medicines Research & Development (formerly EURORDIS Summer School) and the Open Academy School on Scientific Innovation & Translational Research (formerly EURORDIS Winter School) will take place during the same week, incorporating three days of parallel sessions and two days of joint sessions focusing on patient engagement across the whole life-cycle of a medicine. Greater knowledge sharing and networking opportunities will be fostered with both sets of trainees together during the week.

The new format will include off-site visits to research facilities, greater contact time with faculty and EURORDIS staff and the chance to network with fellow patient advocates, supporting each other in learning and practice during the training and beyond.

Applications have been closed!

  • Open Academy School on Medicines Research & Development (formerly EURORDIS Summer School)
    • The training is open to both patient advocates and researchers wanting to become experts in rare disease medicines research and development. 
    • Previous alumni from the Summer School have used the expert knowledge and skills gained through the training to go on to advocate at forums including the European Medicines Agency and European Network of HTA agencies
    • Topics covered at the EURORDIS Summer School include clinical trials methodology, clinical research, ethics in medicines development, regulatory affairs, health technology assessment and marketing authorisation.

    No longer accepting more applications.

  • Open Academy School on Scientific Innovation & Translational Research (formerly EURORDIS Winter School)
    • The programme is reserved for rare disease patient advocates whose patient organisations are based in Europe.
    • EURORDIS launched the training with the aim of deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients. 
    • The training equips participants with knowledge and skills so they are empowered to effectively participate in discussions with the researchers, policy makers and companies responsible for research or research infrastructures.

    No longer accepting more applications.

New programme


Participants of both Schools will spend one week all together in Barcelona during the training week in June. The programme of this week includes three days of parallel sessions, where each set of participants follow their own curriculum, and two days of common sessions focusing on patient engagement and experiential elements.



Trainings will offer networking opportunities for participants of both programmes before, during and after the common week, allowing you to interact with fellow participants in order to form connections, seek advice, gain knowledge and mutually build confidence both during the training and after as part of our alumni community.



Over 40 professionals and experts from academia, regulatory bodies, EU and national institutions, and patient organisations all come together during the common training week to offer their expertise! You’ll get the chance to meet and interact with them not only in the classroom, but also in informal settings.

“The Open Academy training opened my mind to the whole regulatory process and helped define  our advocacy strategy throughout the 17-year journey that led to the European Medicines Agency giving a positive opinion for a treatment for AKU.”

Nick Sireau, United Kingdom, AKU Society

FAQs about the Open Academy Schools 2023

  • What sessions can I find in each School?

    The Open Academy School on Medicines Research & Development has exclusive sessions on:

    • Therapeutic development in rare diseases
    • Methodology, design and ethics of clinical trials
    • Regulatory pathways for Orphan drugs and Patient Engagement
    • Health Technology Assessment (HTA)

    The Open Academy School on Scientific Innovation & Translational Research has exclusive sessions on:

    • The rare diseases research landscape
    • Fundamentals of translational research
    • The diagnostic pipeline for rare diseases: Diagnostic care pathways, Artificial Intelligence for diagnosis
    • Patient generated data
    • Fundamentals and ethics of Genome Editing

    The Joint Programme consists of off-site visits and sessions on:

    • Patient-led research & development
    • Drug repurposing
    • Patient engagement and patient involvement in research and medicines development
  • What expenses are covered?

    For patient representatives, EURORDIS will cover  training costs, accommodation, meals during the training hours, welcome dinner and training materials. EURORDIS is unable to cover travel expenses of trainees. However, a limited number of fellowships are available to patient representatives to cover travel costs (maximum of 250€). Applications for fellowships will be launched after the selection process has been concluded.

    Researchers and Observers attending the Open Academy School on Medicines Research & Development are expected to cover their own travel and accommodation. Welcome dinner and meals during the training hours will be covered by EURORDIS.

  • Can two or more people from the same organisation apply?

    Yes – for each School, more than one person from the same organisation can apply but only one will be selected from the same country. This is to promote wider knowledge transfer across different organisations and countries.

  • If I have already completed the Summer and Winter School, can I still apply?

    If you have previously completed the Summer School, you will not be selected for the Open Academy School on Medicines Research & Development. Similarly, if you have previously completed the Winter School, you will not be selected for the Open Academy School on Scientific Innovation & Translational Research. The updated programme of both trainings are very similar to their previous iterations and we would like to offer as many patient representatives as possible the opportunity to access the knowledge offered by these trainings.

  • When will the selected participants be announced?

    The selected participants will be notified by the end of November via email.

  • Is submitting the Nomination Form mandatory?

    Yes, it is now mandatory to obtain a nomination from at least one of the following: Patient Organisation, National Alliance or European Federation (or Institution in the case of Researchers applying for the Open Academy School on Medicines Research & Development). This is to ensure that all participants who are selected for the trainings are actively engaged in patient representation within the wider community and will go on to share their knowledge successfully.

    If you need help finding or reaching your National Alliance or European Federation for your rare disease, visit this page or email

  • Is there anything that the participants need to do before the training?

    Starting in January, participants will be required to complete pre-training that consists of live webinars and a series of online courses that must be completed before the face-to-face training in June.

Questions? Contact us!

Rachel Butcher, Open Academy Training Manager