Rare Diseases Symposium

Cross-border research: opportunities and experiences

European cooperation is of great importance in tackling rare diseases. Conducting joint research offers opportunities for care improvement for patients with a rare disease. Are you curious about the opportunities for European research into rare diseases? Then come and visit the Rare Diseases Symposium on Wednesday November 6th at the LUMC main building in lecture hall 5. Endo-ERN Coordinator Alberto Pereira will be one of the speakers, together with Faisal Ahmed and ePAG representative Johan de Graaf.

Registration is not required, joining the symposium is free of charge.

Program 

14.00 Opening Prof. Willy Spaan
14.10 ERN Research and EJP-RD Prof. Alberto Pereira
14.30 Disease Registries – Strength In Numbers Prof. Faisal Ahmed
14.50 International studies in cutaneous T-cell lymphoma Prof. Maarten Vermeer

15.10 Break

15.30 Financing opportunities in EJP-RD Sonja van Weely, PhD (ZonMw)
15.50 Virtual data platform Marco Roos, PhD
16.10 Patient representation in a European context Johan de Graaf, patient representative Endo-ERN
16.30 EU Research grants Pieter de Koning, PhD

Symposium summary

SymposiumRare Diseases Symposium
DateNovember 6th, 2019
LocationLeiden, LUMC