Towards a Rare Brain Disease Ecosystem-EBC European Brain Council–Brussels February 20th 2025 – Rare Disease Day 2025 event.
EuMGA has been invited to be part of a project run by the EBC ( European Brain Council), Rethinking MG, a research-driven project offering policy recommendations to make tangible changes with the aim to improve the lives of people living with Myasthenia Gravis across Europe. The project officially kicked off during EBC’s Rare Disease Day 2025 event, Towards a Rare Brain Disease Ecosystem.
The audience was very diverse, including an MEP, European commissioners, doctors, patient
representatives, a filmmaker and pharmaceutical industry representatives.
The welcome was given by president of the EBC and that of EAN, the opening address fell to
the MEP.
Sarah Moon Howe was the filmmaker who herself has a son with Rare Brain Disease and
related severe disabilities. She made a film about the therapist who treats her son.
The first session was then devoted to the “Policy commitment to tackling rare diseases”.
Participants were people connected with the European Commission, representative of the
RDI, rare disease international, the Alliance RD of Poland.
The second session was the “Unmet needs and patient care pathways for rare disease in
Europe”.
Our president was given the opportunity to give a brief overview of the needs of our
community.
Panel discussion followed on pathway methodology, organisational and economic perspective, clinical perspective and industry perspective on MG.
A third session dealt with ‘Towards a Rare Brain Disease Ecosystem & Knowledge Hub:
open discussion.
It was nice that here again, there was a lot of focus on MG.
We hope to build more awareness by presenting our community where ever we can.