A new video has been
released by the 23 French National Rare Disease Networks (FSMR –
Filières Santé Maladies Rares) that
explains why they were created by the French Ministry of Health, their
structure, their missions and how they interact with the European Reference
Networks on Rare Diseases. The video is in French but subtitles are available
The French rare
disease networks have been active since 2015 as a part of the second national
rare disease plan. Their objective is to lead and coordinate actions by
bringing together reference and competence expert rare diseases centres,
diagnostic laboratories, research units, universities, educational, social and
medico-social structures, and patient groups.
The French National Rare Disease Networks are a very good example of the benefits of creating national networks that unite the various expert centers of the rare disease community in one country and that can make the link with the centers which are members of the European Reference Networks. VASCERN, its HCP members and patient organisations member of the European Patient Advocacy Group (ePAG) aim to encourage the creation of national networks within each country and the cooperation of each HCP members with the national networks.
cooperates closely with FAVA-Multi (The French Network
for Rare Vascular Diseases) in order for our ERN outputs to be
disseminated in France.