• 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.

• 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.

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

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.

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 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.

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

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 marta.campabadal@eurordis.org.

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.