EURORDIS Winter School

The EURORDIS Winter School on Scientific Innovation and Translational Research consists of a one week training in April, and the training modules below, which are available for anyone to use for free. 

Winter School

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.

Expert speakers and researchers from across Europe deliver the face-to-face training sessions. 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 12-16 April 2021. To apply, please fill in the application form here. The deadline for applications for this training is 13 September. Results will be announced end-October.

Exceptionally taking place in April in 2021, the EURORDIS Winter School normally takes place earlier in the year.

Take part in free online training

Learn more about rare disease research at a time and place that suits you! Take the free online modules below. Each module includes a lesson and quiz.

The below online modules are from the first edition of the EURORDIS Winter School. The conditions of use for all EURORDIS training have been licensed with Creative Commons.

Unit 1: Setting the landscape

Winter School Unit 1: Setting the landscape

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Unit 2: Clinical Diagnosis

Winter School Unit 2: Genetic research to clinical diagnosis of Rare Diseases

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Unit 3: Patient data

Winter School Unit 3: Sharing patient data

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Unit 4: From research to therapies

Winter School Unit 4: From research to therapies

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Nearly 60 patient advocates, from around Europe, 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 are co-financed through the EU-funded Solve-RD project, of which EURORDIS is a partner.

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