The Necker-Enfants malades university hospital is a key player in the care of rare and chronic diseases and disabilities. Patients suffering from these diseases account for more than a third of its activity > Order of November 25, 2017 on the labeling of networks of reference centers taking care of rare diseases.
To discover the different specialized teams of our hospital, click on the FLASHING GREY BUTTON corresponding to the group of diseases you are interested in.
Epilepsy is a neurological disease that affects 1% of the population. It remains stigmatizing and still taboo today: lack of knowledge leads to fear, refusal and inappropriate reactions. Rare epilepsy affects less than 5 in 10,000 people in the general population. Rare epilepsy is associated with seizures that are often drug-resistant, with cognitive and motor development disorders, and with psychiatric disorders such as autism spectrum disorders.
The reference center for rare epilepsy (CRéER), coordinated by the Necker-Enfants malades hospital site, brings together 27 specialized centers, pediatric and adult, throughout France with expertise in rare and complex epilepsy. Capitalizing on the wide range of diagnostic and treatment modalities as well as the individual expertise of our centers in the field of rare and complex epilepsy, the members of CRéER work together to ensure significant added value for patients with rare epilepsy in terms of access to diagnosis and care by developing therapeutic education programs integrated into each patient’s pathway, with patient and family associations.
Our coordinating site at Necker integrates research into the care pathway by identifying the characteristics of rare epilepsies, their often genetic etiological bases, and develops translational research programs with our research group at the Imagine Institute focused on new therapeutics and clinical trials.
*data for the year 2019