The Open Academy School on Medicines Research & Development is a training programme offered by EURORDIS, designed to help participants become experts in medicines research and development. It is made up of e-learning modules, pre- and post-training webinars from January-June 2023 (estimated ~20 hours) and in-person training taking place from 19-23 June in Barcelona.

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

  • Successfully advocate for national healthcare systems to fund rare disease treatments.
  • Register as a patient expert and participate in activities in the European medicines Agency (EMA) such as protocol assistance and scientific committees.
  • Contribute to Health Technology Assessment (HTA) on a regional/national level.
  • Be involved in an ethics committee in local hospitals or on a regional or national level.

The pre-training includes activities such as:

  • E-learning modules on Pharmacovigilance, Market access & HTA, Ethics in Medicines Development, and more.
  • Introductory and networking webinars. `

The training week consists of:

  • Three days of subject-specific sessions on topics such as Therapeutic development in rare diseases, Clinical Trials: Methodology, Design and Ethics and European Medicines Agency (EMA) – Regulatory pathways for Orphan drugs and Patient Engagement.
  • Two days of joint sessions with participants from the Open Academy School on Scientific Innovation & Translational Research (formerly EURORDIS Winter 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 or researcher. 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)