Open Academy Schools 2025

The Open Academy Schools enter a new era under the European Rare Diseases Research Alliance (ERDERA) partnership. The Schools will now take place in Barcelona from 2-5 June 2025, lasting 4 days instead of the usual 5. This year, the program has been thoughtfully condensed, ensuring it remains equally engaging, interesting, and relevant.

The face-to-face intensive training of the Open Academy School on Medicines Research & Development and the Open Academy School on Scientific Innovation & Translational Research take place during the same days, 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 training.

The programme will include one off-site visit to a research facility/hospital, 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.

New online training available in 2025!

Interested in learning more about data management, ethics and AI in rare disease research? Keep reading!

We are thrilled to introduce a new addition to the 2025 edition of the Open Academy Schools—a specialized online program titled “Navigating Rare Disease Research: Data, Ethics, and AI in Europe.” This innovative training is designed for 20 rare disease advocates from around the globe and will consist of 18 hours of virtual instruction spread over six months (January to June). The program will include e-learning, webinars, and assignments.

This training has been developed in response to the growing need for advocates to understand and navigate the complexities of data management, ethical considerations, and the role of AI in rare disease research across Europe. Its primary objective is to equip participants with the knowledge and skills to effectively engage with and influence data-driven research initiatives in the rare disease community.

Applications for all three Schools, including this new online program, have now closed. Participants will be notified by the end of November via email.

“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 have closed!

Open Academy School on Medicines Research & Development
- The training is open to 30 patient advocates and 10 PhD/up to 2yrs post-PhD researchers 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.
➡️Download the Open Academy School on Medicines Research & Development flyer

➡️Take a look at the provisional programme.
Open Academy School on Scientific Innovation & Translational Research
- The programme is open to 35 rare disease patient advocates and 5 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.
➡️Download the Open Academy School on Scientific Innovation & Translational Research flyer

➡️Take a look at the provisional programme.
NEW! - Navigating rare disease research: data, ethics, and AI in Europe
- This online programme is open to 20 rare disease patient advocates and PhD/up to 2yrs post-PhD researchers from Europe.
- It is specially designed for those who want to master the fundamentals of rare disease research data, including types, sources, and the roles of key actors, while addressing challenges like data standardization, codification, and the complexities of ultra-rare diseases.
- This programme has a focus on navigating the ethical, regulatory, and data protection frameworks, including GDPR, informed consent, and AI integration, including the importance of data sharing, patient perspectives, and international collaboration.
➡️Download the flyer for the training ‘Navigating rare disease research: data, ethics, and AI in Europe’

FAQs about the Open Academy Schools 2025

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 online training ‘Navigating rare disease research: data, ethics, and AI in Europe’ has modules on:
- Introduction to research and data sources
- Health data in rare disease research
- Data sharing: benefits, challenges and ethics
- Ethical and regulatory frameworks
- Data processing and actors involved
- Advanced topics in data use
- Patient perspectives and AI applications
The Joint Programme consists of off-site visit and sessions on:
- Patient-led research & development
- Compassionate us
- Patient engagement and patient involvement in research and medicines development
What expenses are covered?

For European patient representatives, ERDERA will cover training costs, accommodation, meals during the training hours, welcome dinner and training materials. ERDERA 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 500€). Applications for fellowships will be launched after the selection process has been concluded.

Researchers attending the Open Academy Schools are expected to cover their own travel and accommodation. Welcome dinner and meals during the training hours will be covered by ERDERA.

Observers from outside Europe attending the Open Academy Schools are expected to cover their own travel and accommodation. Welcome dinner and meals during the training hours will be covered by ERDERA.

!! 🌍 Rare Diseases International has a limited number of fellowships available for our members from outside Europe. If you are interested, please apply to Open Academy by 1 November. RDI Fellowship information will be sent to all eligible successful Open Academy applicants.

!! 🍁 Canadian applicants will automatically be considered to receive funding for travel from the Institute of Genetics. For more information contact jillian.banfield@dal.ca.
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.
What is ERDERA?

The European Rare Diseases Research Alliance (ERDERA) aims to make Europe a global leader in rare disease research and innovation, improving the health and well-being of 30 million people living with rare diseases in Europe. It seeks to coordinate and align research efforts across Europe, ensuring that every rare disease patient can access cutting-edge research and treatments, ultimately driving better prevention, diagnosis, and treatment outcomes.

You can read more about it here.
Can I apply to a in-person school and to the new online programme at the same time?

Yes, but be aware of the time commitment required for each training. Managing two programs simultaneously can be challenging.
Do I need to be a member of EURORDIS or represent an organisation/research institute to apply?

Patient representatives don’t need to be a member of EURORDIS but must represent a patient organisation, while researchers must represent a research institute or hospital.
Is there anything that the participants need to do before the in-person training?

Starting in January, participants of both in-person 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.

Also starting in January, participants in the new online Data programme will be required to complete an online course within the first 4 weeks, followed by monthly webinars from January to June.
When will the selected participants be announced?

The selected participants for all three training programmes will be notified by the end of November via email. If you are not selected, you will also be notified via email.
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.
What happens if I can't attend all the webinars for the Data & Research online programme?

Attendance to the webinars is mandatory, and we will provide the programme in advance so participants can plan their agendas. However, we understand that sometimes it’s impossible due to other commitments, so participants agree to watch the recordings afterward.
I am interested in learning more about drug repurposing.

You’re in luck! The REMEDi4ALL, a consortium brings together a unique combination of expertise to address the complexities of drug repurposing, is organising a Repurposing Bootcamp to learn more about this topic in June 2025 in Barcelona, right after the Open Academy Schools! You can stay an extra day in Barcelona and participate in this training.

What?

Repurposing Bootcamp is a specialised training programme designed to empower patient representatives with the essential knowledge and tools to drive innovation through drug repurposing.

When?

6 June 2025, 09:00 CET. The Open Academy Schools take place from the 2 to 5 June.

Where?

Hotel Best Front Maritim,Barcelona Spain

APPLY NOW!

Programme highlights

Participants of both in-person Schools join together in Barcelona during the training days in June. The programme of this 4 days includes parallel sessions, where each set of participants follow their own curriculum, and common sessions, focusing on patient engagement and experiential elements.

Networking

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.

Faculty

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.

The Open Academy Schools 2025 have been developed in collaboration with:

ERDERA has received funding from the European Union’s Horizon Europe research and innovation programme under grant agreement N°101156595. Views and opinions expressed are those of the author(s) only and do not necessarily reflect those of the European Union or any other granting authority, who cannot be held responsible for them.