Assistance Publique – Hôpitaux de Paris (AP-HP) is the largest university hospital centre in Europe, which includes 12 hospital groups located in the Paris region. Within these 12 groups, 39 hospitals provide care and management to 8 millions of patients each year. AP-HP offers a public healthcare service for all, 24 hours a day and coordinates 50% of the clinical research studies in France.
Pioneer actions have been conducted in France in the field of rare diseases: it is the first country in the European Union which set up and implemented national plans for rare diseases. France has introduced the organisation in “reference centres” gathering highly specialised experts and resources to coordinate a multidisciplinary care offer to patients presenting a rare disease. The reference centre also seeks to share best practices and educate professionals on rare disorders. Today, there are 133 highly expert centres accredited at the national level in France, 73 of them are within the AP-HP hospitals.
Paris-Sud university Hospitals is one of the 12 hospital groups of the AP-HP, composed of three hospitals: Antoine-Béclère in Hauts-de-Seine, Bicêtre and Paul-Brousse in Val-de-Marne. The hospital group offers a complete health care, characterized by strong complementarities in terms of pediatric-adult care, within the framework of hospital-university excellence. The reference centre of familial amyloid polyneuropathy (FAP) and other rare peripheral neuropathies is coordinated by Pr David Adams since 2005 and is located at Bicêtre hospital. It is specialized in peripheric neuropathies for more than 25 years with a clinical expertise and a technical platform in biology, genetics, immunology and pathology leading to diagnosis in more than 90% of cases. This centre develops new techniques for early diagnosis of peripheral neuropathies and participates to several international clinical trials. It is a member of the French nati! onal net work for rare neuromuscular diseases FILNEMUS.
Professor Andoni Echaniz-Laguna, MD, PhD, is a neurologist in the Department of Neurology at Bicêtre University Hospital, Paris, France.
David Adams is Head of the French National Reference Centre for Familial Amyloidotic Polyneuropathy (FAP), a position held since 2005, and has been the Coordinator of the French Network for FAP (CORNAMYL) since 2010 and built the European Network for ATTR amyloidosis (ATTReuNET) in 2015. He was made a Professor of Neurology at the Université Paris Sud, France in 1996. …