The ERDERA consortium will come together in Coimbra, Portugal, for its third General Assembly Meeting, marking the end of the partnership’s second year and providing an opportunity to review progress, deepen discussions and strengthen collaboration. ERDERA will also welcome the wider rare diseases community to its free Open Session, broadcasted live online.
Dedicated to ultra-rare diseases, the session will share inspiring research and patient stories while examining innovative methodological and regulatory approaches to clinical research and treatment development. It will connect these developments with ERDERA’s work and its commitment to advancing research alongside patients, with the shared goal of improving the lives of people living with rare diseases.
The session is free to attend, but registration is required.
Agenda
Times are in WEST (Portugal time)
13:30 – 14:15 – Welcome Speeches
Amilcar Falcão, Rector of the University of Coimbra
Daria Julkowska, PhD. ERDERA Coordinator, INSERM
Dusan Sandor, European Commission, DG Research and Innovation, HaDEA
14:15 – 15:00 – Keynote speech (Remote): Title TBD
Pr. Sonia Vallabh, PhD. Director, Prion Therapeutic Science, Broad Institute, Boston MA, USA (remote)
15:00 – 15:45 – Keynote speech (Remote): “Regulatory Preparedness for the Next Generation of Rare Disease Therapies: Innovation, Evidence and Patient-Centered Development “
Julian Beach, Medicines and Healthcare products Regulatory Agency, UK(Remote)
15:45 – 16:30 – Keynote speech: Title TBD
Annemieke Aartsma-Rus, PhD. Professor of translational genetics. Department of Human Genetics. Leiden, Netherlands