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March 15 2019
French National Rare Disease Networks video available with English subtitles.
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 in English.
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.