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Eurordis - Rare Disease Europe

Open Academy Schools 2024

The 2024 edition of the Open Academy Schools will take place in-person on 3-7 June in Barcelona.

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) take place during the same week, incorporating parallel sessions, focusing on School-specific topics, and joint sessions focusing on patient engagement and leadership. Knowledge-sharing and networking opportunities are fostered throughout the week.

The programme will include off-site visits to research facilities/hospitals, lots of contact time with faculty and EURORDIS staff and the chance to network with fellow patient advocates and researchers, supporting each other in learning and practice during the training and beyond. Schools are delivered in English in a blended format, comprising e-learning modules, pre-training webinars and face-to-face intensive days.

“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

Why should you apply?


The Open Academy accompanies patient advocates by offering rare-disease specific comprehensive training programmes that empower advocates with the knowledge, skills and confidence they need to to engage with different stakeholders as equal partners.

Our Schools offer a blended learning approach including eLearning courses, webinars and in-person training as well as research visits and networking opportunities. Our programme is developed with expert trainers identified from the research, regulatory, industry and patient community to build competence and provide support and advice.

Thanks to EURORDIS’ experience and reputation, trainees receive up-to-date, actionable content delivered through engaging learning methods, leading to the achievement of concrete results. Amongst other examples, Open Academy alumni have gone on to:

  • Participate in or set up disease specific CABs (Community Advisory Board) to help design clinical trials and identify the most relevant end points for patients
  • 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 with the EMA (European Medicines Agency) such as protocol assistance and scientific committees

Our programmes are provided free of charge to patient advocates and are designed with accessibility in mind. Additionally, Open Academy graduates benefit from our alumni network which offers ongoing support and access to exclusive additional resources, networking, volunteer opportunities and further training.

Applications will close on 27
October 2023!


I want to apply to…


  • Open Academy School on Medicines Research & Development (formerly EURORDIS Summer School)
    • The training is open to patient advocates wanting to become experts in rare disease medicines research and development. 
    • Previous alumni 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 include clinical trials methodology, clinical research, ethics in medicines development, regulatory affairs, health technology assessment and marketing authorisation.


  • Open Academy School on Scientific Innovation & Translational Research (formerly EURORDIS Winter School)
    • The programme is for rare disease patient advocates and PhD/up to 2yrs post-PhD researchers whose organisations are based in Europe.
    • EURORDIS launched the training with the aim of deepening 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.


Programme highlights


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



Trainings 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 before joining our alumni community.



Over 30 experts from academia, regulatory bodies, EU and national institutions, and patient organisations 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.

FAQs about the Open Academy Schools 2024

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

    Starting in January, participants of both schools 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