Two Researchers in a hospital
2 January 2017

Rare diseases: the excellence of the French care management model recognised in Europe

The European Commission has just approved the candidacies of four French healthcare pathways as European Reference Networks (ERNs) on rare diseases. Marisol Touraine and Thierry Mandon congratulate these representatives of French excellence, which enable France to confirm its status as a leading country in the provision of assistance to the sick and their friends and families.
Content published under the Government Cazeneuve from 2016 06th December to 2017 14th May
Marisol Touraine and Thierry Mandon congratulated members of the four French healthcare pathways whose candidacies for membership of European Reference Networks on rare diseases have just been approved by the European Commission.
The four French healthcare pathways are:
  • SENSGENE, a pathway dedicated to rare sensory diseases,
  • FIMARAD, a pathway in the healthcare community involved in rare dermatological diseases,
  • the MARIH Consortium, a healthcare pathway focusing on rare immuno-haematological diseases,
  • the FAVA-Multi Consortium, a pathway bringing together all actors involved in treating rare multi-systemic vascular diseases.
With these four representatives of medical excellence, France confirms its status as a leading country in provision of assistance to the sick and their friends and families, and sees its organisational and management model recognised as among the most effective in Europe.
"France can be proud of having a system second to none, and one that continues to be the envy of the world”, stated Marisol Touraine, who believes that recognition of French medical teams at European level “marks a further step in the quality of care provided to those suffering from rare diseases and their friends and families – some 3 million people in France alone – in that it improves our diagnostic and treatment capacities and reinforces solidarity between member States, through greatly increased access to highly specialised care.”

The French model for management of rare diseases

French excellence with regard to management of rare diseases can be put down to the unique and particularly advanced way in which its organisation is structured, leading to close collaboration between healthcare professionals, researchers and patients’ associations. This is the basis of the 3rd National Plan for Rare Diseases announced last June by Marisol Touraine and Thierry Mandon.
Rare disease reference centres are at the heart of the scheme. They bring together highly specialised medical teams active in the fields of treatment, research and training. The 131 centres draw on reference sites and skills centres, which monitor patients in close proximity to their homes, in liaison with nearby hospitals. And finally, 23 French healthcare pathways coordinate action and oversee networking between the various professional and community actors involved.

European Reference Networks

At European level, 23 European Reference Networks cover 370 hospitals and 960 highly specialised units in 25 European Union countries and Norway. By pooling their expertise, Europe-wide, on specific diseases, these networks facilitate patients’ wider access to diagnosis, treatment and top-quality care. They create links between member States’ expert professionals and foster the emergence of such innovative medical practices as tele-expertise, when, for example, an expert second opinion is required.