The Open Academy School on Scientific Innovation & Translational Research is a training programme offered by EURORDIS, with the aim of deepening patient representatives’ understanding of how preclinical research translates into real benefits for rare disease patients. It is made up of e-learning modules, pre- and post-training webinars from January-June 2023 (estimated ~20 hours) and inperson training taking place from 19-23 June in Barcelona..

Previous alumni have used the skills and knowledge gained from the training to:

  • Reach out to research groups working in the field of their rare disease with the aim to codesign or jointly submit proposals for research projects, ensuring the project meets the needs and priorities of the patients.
  • Find academics, clinicians, and/or private partners to drive forward a therapeutic development such as repurposing an existing product.
  • Successfully advocate for national healthcare systems to fund rare disease treatments.
  • Disseminate knowledge within their organisation and continue to share experiences and best practices with alumni and other patient organisations.
  • Use the information to maximise their own advocacy and support work.

The pre-training includes activities such as:

  • E-learning modules on Sharing patient data, Genome editing, Genetic research to clinical diagnosis of Rare Diseases, and more.
  • Introductory and networking webinars.

 

The training week consists of:

  • Three days of subject-specific sessions on topics such as setting the landscape, going from diagnosis to translational research and from data to therapies.
  • Two days of joint sessions with participants from the Open Academy School on Medicines Research & Development (formerly EURORDIS Summer School), focusing on patient engagement across the life-cycle of a medicine, with sessions designed to promote greater knowledge sharing.
  • Off-site visits and networking opportunities

To take part, you must be a rare disease patient advocate. As all training is conducted in English, a good level of the language is required. Patient advocates participating must represent an organisation which is a member of EURORDIS. If this is not your case, you are still invited to apply but your organisation will be asked to apply to become a member of EURORDIS should you be selected.

REGISTRATION FORM
For important updates, deadlines and for the online registration please visit the website at the following Link

EURORDIS covers patient representative’s training costs, accommodation, meals during the training hours, welcome dinner, and training materials. A limited number of fellowships will also be available to patient representatives to cover travel costs. Researchers and Observers are expected to cover their own travel and accommodation. Welcome dinner and meals during the training hours will be covered by EURORDIS.

English

TBD

Rachel Butcher (rachel.butcher@eurordis.org)