On May 14th and 15th OIFE was well represented at the online European Conference on Rare Diseases (ECRD) with 5 representatives, including OIFE president and OIFE Youth Coordinator. In addition 3 people from the OIFE-community attended the event on behalf of other stakeholders. The ERCD conference was originally planned to take place in Stockholm. 1,500 people from 57 countries registered for the conference, which is recognized globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.

The conference was divided into 6 themes and we tried to spread out, so we had people from OIFE attending all themes:

  • Theme 1 – The future of diagnosis: new hopes, promises and challenges
  • Theme 2 – Our values, our rights, our future: shifting paradigms towards inclusion
  • Theme 3 – Share, Care, Cure: Transforming care for rare diseases by 2030
  • Theme 4 – When therapies meet the needs: enabling a patient-centric approach to therapeutic development
  • Theme 5 – Achieving the triple A’s by 2030: Accessible, Available and Affordable Treatments for people living with a rare disease
  • Theme 6 – The digital health revolution: hype vs. reality


OIFE was also well represented among the speakers. Rebecca Tvedt Skarberg, who is also an ePAG in ERN BOND, gave one of the opening talks about future scenarios for rare diseases connected to the Rare2030 project, which got a lot of positive feedback. She also contributed as a speaker in two of the sessions later in the program. See another post about the Rare2030 scenarios.

One of the other opening speakers besides Rebecca were David Lega, who is a member of the EU Parliament, living with a rare condition himself.
See his opening talk through this link.

All 29 ECRD sessions are available on demand for you to access via the same online platform for one year after the conference! If you didn’t already register for ECRD, you can register now at new preferential rates to access all session recordings.




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