International Rare Disease Day

The Caen Normandy University Hospital, its reference centers, skills and "rare diseases" platforms and the Normandy Rare Diseases Expertise Platform are joining the "rare diseases" days organized throughout the country and internationally by organizing a half-day of information on Thursday, February 29, from 1 p.m. to 6 p.m. in the main entrance hall of the University Hospital.

The management of rare diseases at the Caen Normandy University Hospital

There are approximately 7,000 rare diseases worldwide. A disease is considered rare when it affects fewer than one patient in 2,000.

In France, each rare disease affects fewer than 30,000 people, but due to their cumulative number, 3 to 4 million French people are affected, including approximately 146,000 in Normandy. These diseases often affect children but also adults: despite access to orphan drugs and active research in this area, most of them do not have a cure.

The Caen Normandy University Hospital treats many rare diseases through its 9 reference centers, expertise and platforms .

Each entity is organized around expert teams specializing in one or a group of rare diseases and carries out missions of care, research, teaching and training. They also enable the organization of healthcare pathways dedicated to patients for appropriate and coordinated care.

A rare disease expertise platform in Normandy

Created in June 2022 and supported by three healthcare institutions—Caen Normandy University Hospital, Rouen University Hospital , and Le Havre Hospital Group— the platform brings together 112 expert centers certified in 2017, covering 23 healthcare pathways and 31 partner patient associations. Its objectives are to guide and support patients with rare diseases, their families, and all relevant healthcare professionals.