Patient partnerships in rare disease research
In 2019, Professor Joost Hoenderop was one of the 21 successful applicants
to the JTCs of the EJP RD.
He proposed a collaborative research project for improving diagnostics and grasping the disease mechanisms of rare hypomagnesemia in patients with CNNM2 mutations with 6 co-applicants including Antonio Cabrera Cantero from HIPOFAM (FEDERG member), the Spanish Association for information and research on familial hypomagnesemia.
Joost and Antonio describe their experiences on this partnership in this guide to patient partnerships in rare disease research projects, published by EURORDIS.
The guide highlights the importance of collaboration between researchers and patients, and how networks such as ERKNet help to establish contacts between our groups.