Adult Leukodystrophies

Leukodystrophies are rare genetic diseases that impair the synthesis or maintenance of myelin, primarily affecting glial cells.

They are categorized into two types: hypomyelinating and demyelinating leukodystrophies.

These progressive neurodegenerative diseases can manifest during childhood, adolescence, or adulthood.

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The Team

The Reference Center for Adult Leukodystrophy is multidisciplinary team that aims to provide the best support to patients diagnosed with leukodystrophies. It consists of physicians, a neuropsychologist, a psychologist, engineers, a dietitian, a genetic counselor, a secretary, and a social worker.

See the entire team

Clinical Trials

Our clinical trials and studies focus on two major areas:

• Researching biomarkers for early diagnosis to improve patient care;
• Developing new therapies for leukodystrophies.

Some of our trials are still recruiting patients. You can contact us for more information.

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Therapeutic Education for Patients

Our therapeutic education program for patients (in French, Education Thérapeutique du Patient, ETP) called “Leucodyssée,” is directed to patients, parents of minors, and caregivers. It consists of five workshops that will allow attendees to own and better manage their disease.

See the program