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Applications launch for Open Academy Schools 2025

septembre 2024

EURORDIS – Rare Diseases Europe has today launched applications for the 2025 Open Academy Schools, ushering in an exciting new era under the European Rare Diseases Research Alliance (ERDERA).

With a new and streamlined programme, the 2025 Schools will empower rare disease patient advocates with the skills, knowledge, and networks they need to drive change in rare disease policy and research across Europe.


A new format and focus

The 2025 Open Academy Schools will take place in Barcelona from 2-5 June 2025, featuring a four-day programme that promises to deliver the same high-quality training in a more focused format. The two main Schools – the Open Academy School on Medicines Research & Development and the Open Academy School on Scientific Innovation & Translational Research – will run concurrently, allowing participants to engage in both specialised and joint sessions.

Throughout the training, participants will be able to connect with and learn from faculty, EURORDIS staff, and fellow advocates. An off-site visit to a research facility or hospital will complement the learning experience, providing a hands-on view of the latest advancements in rare disease research. This face-to-face training is preceded by e-learning modules and webinars, ensuring participants arrive fully prepared.


New online programme expands learning opportunities

As part of its commitment to staying at the forefront of rare disease education, EURORDIS is also launching a new online programme for 2025: “Navigating Rare Disease Research: Data, Ethics, and AI in Europe.” This six-month online course, running from January to June 2025, is designed for 20 patient advocates and researchers who want to delve into the complexities of data management, ethical frameworks, and the role of artificial intelligence in rare disease research.


Empowering advocates to make a difference

The Open Academy Schools are designed to equip patient advocates with the knowledge, skills, and confidence to engage as equal partners with stakeholders in the research, policy, and healthcare fields. Alumni of these programmes have made significant contributions to the rare disease community by participating in the design of clinical trials, co-authoring research proposals, and representing patients in key regulatory bodies such as the European Medicines Agency (EMA).

Thanks to EURORDIS and ERDERA’s partnership, participants will benefit from expert instruction across diverse areas of rare disease research and advocacy, ensuring that they are well-prepared to influence policy and research at both national and European levels.


Why Apply?

The 2025 EURORDIS Open Academy Schools offer participants the opportunity to gain deep insights into rare disease research, regulation, and advocacy. Each programme is tailored to specific areas of expertise:

The Open Academy School on Medicines Research & Development: This programme is open to 30 patient advocates and 10 PhD researchers. Participants will explore topics such as clinical trials methodology, regulatory pathways for orphan drugs, health technology assessments, and ethics in medicines development.

The Open Academy School on Scientific Innovation & Translational Research: Open to 35 patient advocates and 5 PhD researchers, this school delves into the process of translating pre-clinical research into real-world outcomes. Participants will learn about the diagnostic pipeline, genome editing, and the ethics of scientific innovation in rare diseases.

Navigating Rare Disease Research: Data, Ethics, and AI in Europe: This online programme is tailored to 20 participants who wish to master the intricacies of data management, ethics, and AI in rare disease research. It covers key topics such as data standardisation, patient perspectives, and the ethical implications of data use in research.


Applications Now Open!

Applications for all three programmes are now open and will close on 26 October 2024. EURORDIS is seeking motivated patient advocates and researchers who are passionate about making a difference in the rare disease community. All training programmes are provided free of charge to patient advocates, and a limited number of fellowships are available to cover travel expenses for the in-person Schools.


Julien Poulain, Communications Manager