As project manager of the French Network for Rare Neurological Diseases “BRAIN-TEAM”, one of my tasks is to coordinate projects of all french reference centers which have been labeled by the French ministry of health for their high expertise in rare neurological diseases. This coordination is done along with any other partners that could be involved in this field of rare diseases. The BRAIN-TEAM is also a member of the European Reference Network for Rare Neurological Diseases (ERN-RND).
Together with my 6 colleagues from BRAIN-TEAM, our everyday work is to build the most effective network of partners as well as to favor the best innovative projects for rare neurological pathologies related to: medical and social care, training of professionals, translational research, info dissemination and co-working with patient associations.
BRAIN-TEAM is less than 3 years old but still, I am proud to have been able to propose the first action towards general practitioners since GPs play a central role in the care journey of rare disease patients. Along with the other French Network for Rare Diseases, we regularly attend national congresses of GPs, senior but also young practitioners and GPs medical students. This year, we are glad to be invited as special guest to the Opening Keynote Lecture of the 13th Congress of French GP in Paris.
The goals of such public awareness campaign are manifold, among them tackling stigma and patient discrimination but the most important for me is to put the light on rare diseases to favor policymakers, to enhance research promotion, improving access to and uptake of treatments. Rare disease patients are not rare in numbers, and the engagement of the “rare community” has to be visible at least a day per year!