Reference Centers

About NRCs

The INMG works closely with clinicians who lead Reference Centers for Rare Neurological and Neuromuscular Diseases.

What is a Rare Disease Reference Center?

A rare disease reference center plays both:

• a role of expertise for a disease or group of rare diseases, having developed specific and recognized skills in this field;
• a role of referral, which enables it, due to the rarity of the condition treated and the limited number of specialist teams in the field, to attract patients and professionals from beyond its local healthcare area, at interregional, national, or international level.

Reference centers have six missions:

• to facilitate diagnosis and define a strategy for therapeutic, psychological, and social support care;
• to define and disseminate care protocols, in collaboration with the French National Authority for Health (HAS) and the National Union of Health Insurance Funds (UNCAM);
• to coordinate research work and contribute to epidemiological surveillance, in collaboration with the French Institute for Public Health Surveillance (InVS);
• to take part in training and information initiatives for healthcare professionals, patients, and their families, in collaboration with the National Institute for Prevention and Health Education (INPES);
• to lead and coordinate networks of healthcare and medico-social correspondents;
• to act as key points of contact for supervisory authorities and patient associations.

National Reference Centers

Nrc

National Reference Center for Hereditary or Rare Cardiac Rhythm Disorders

Philippe Chevalier

1 member 1 team

Nrc

Reference Center for Developmental Anomalies and Malformation Syndromes, South-East

Damien Sanlaville

2 members 1 team

Nrc

Reference Center for Neuromuscular Diseases

Carole Vuillerot

1 member 1 team