European cooperation is of great importance in tackling rare diseases. Conducting joint research offers opportunities for care improvement for patients with a rare disease. Cross-border research was the central topic of the annual Rare Diseases Symposium on November 6th in the LUMC
During the symposium, both internal and external attendees were given an update on international developments within the field of rare diseases. Prof. Alberto Pereira gave an introduction on research within the European Reference Networks (ERNs) and the European Joint Programme on Rare Diseases (EJP RD). The EJP RD actions are organized within major pillars: collaborative research funding, coordinated access to data & services, capacity building & empowerment, and accelerating translation of research & therapy development.
Specific aspects of EJP RD were discussed in more detail: disease registries (prof. Faisal Ahmed), financing opportunities (dr. Sonja van Weely, ZonMw), and the EJP RD virtual platform (dr. Marco Roos). That successful international collaboration can significantly improve healthcare was nicely illustrated by prof. Maarten Vermeer. He shared his experiences with European and worldwide research within the field of Cutaneous Lymphoma.
Johan de Graaf also shared his experiences with cross-border research, from a patient-representative point of view. For each ERN disease grouping, there is a European Patient Advocacy Group (ePAG). Johan is ePAG for Endo-ERN and involved in several international rare disease initiatives. The symposium was concluded with an overview of EU research grant opportunities (dr. Pieter de Koning).