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Eurordis - Rare Disease Europe

EURORDIS Winter School

EURORDIS Winter School

The EURORDIS Winter School on Scientific Innovation and Translational Research consists of a one week training in March, and the free e-learning modules below, available on demand.

EURORDIS launched this 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 researchers, policy makers and companies responsible for research or research infrastructures.

Expert speakers and researchers, from across Europe, deliver the training each year. The topics covered include the history of genetics, diagnostics, new technologies in gene therapy and drug repurposing.

The first edition of the face-to-face training of the EURORDIS Winter School was held in March 2018 in Paris.

Next Winter School training

The next EURORDIS Winter School will take place on 21-25 March 2022, online. Applications to the Winter School 2022 are now closed. Applicants will be informed about the results by end-October.

Take part in free online training

Learn more about rare disease research at a time and place that suits you! Take the free e-learning courses below.

The conditions of use for all EURORDIS e-learning courses have been licensed with Creative Commons. More information on the conditions of use.



Course 1: Introduction to the European and international research landscape


Unit 1: Setting the landscape

Course 2: Setting the landscape

⌛️ 4h15m

Unit 2: Clinical Diagnosis

Course 3: Genetic research to clinical diagnosis of Rare Diseases

⌛️ 3h45m

Unit 3: Patient data

Course 4: Sharing patient data

⌛️ 4h30m

Unit 4: From research to therapies

Course 5: From research to therapies


Unit 5: Genome editing

Course 6: Genome editing

⌛️ 4h30m


Support materials for the Winter School


Registries: how can you work with existing registries or set up a registry?

⌛️ 1h30m


About the EURORDIS Winter School

  • Alumni

    Close to 60 patient advocates, from around Europe, have participated in the face-to-face training of the EURORDIS Winter School to date. These include several patient advocates involved in the European Patient Advocacy Groups (ePAGs).

  • Financial support

    The EURORDIS Winter School 2020-2023 receives funding under the European Joint Programme on Rare Diseases (EJP RD). The EJP RD has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement N°825575.

    The 2018 and 2019 editions of the EURORDIS Winter School were co-financed through the EU-funded Solve-RD project, of which EURORDIS was a partner.

    Financial support is also provided by AFM-Téléthon, the French Muscular Dystrophy Association.

Contact the Open Academy Team

For more information, please contact

Tamara Kovazh, Open Academy Manager - Training Coordinator

Tamara Kovazh

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