Multidisciplinary Consultation Meetings (RCP)
National RCP “White Matter disorders, diagnoses and treatments”:
Organizers: Reference Center for Adult Leukodystrophy-Montpellier (Prof. Xavier Ayrignac) and Reference Center for Adult Leukodystrophy-Paris (Prof. Fanny Mochel).
Objective: Discussion of adult patients with white matter abnormalities (genetic, inflammatory, vascular, tumoral) where diagnostic and/or therapeutic questions arise.
Format: Videoconference
Frequency: Monthly, usually the 1st Monday of the month from 1:00 PM to 3:00 PM
Contact: rcp-leukofrance-adulte@brain-team.fr
National RCP “Imaging of patients with X-linked Adrenoleukodystrophy”:
Organizer: Reference Center for Adult Leukodystrophy-Paris (Prof. Fanny Mochel).
Objective: Discussion of adult patients with adrenoleukodystrophy to facilitate the diagnosis of cerebral forms and therapeutic options.
Format: Videoconference
Frequency: Monthly, usually the 3rd Friday of the month from 1:00 PM to 3:00 PM
Contact: crmr.leucodystrophies.psl@aphp.fr
Regional Multidisciplinary Tumor Board (RCP) “Neurometabolic Imaging”:
Organizer: Adult Neurometabolic Reference Center (CRMR) Paris (Prof. Fanny Mochel).
Objective: Discussion of adult patients whose imaging may suggest a hereditary metabolic disorder.
Format: Videoconference
Frequency: Monthly, usually the 3rd Friday of the month from 1:00 PM to 2:00 PM
Contact: crmr.neurometabolique-adulte.psl@aphp.fr
Actions Led by the BRAIN-TEAM Health Network
A Support Program for Caregivers of Patients by BRAIN-TEAM Psychologists
The AIDAN program (Interdisciplinary Support for Caregivers in Rare Neurological Diseases) is aimed at caregivers of patients suffering from rare neurological diseases, whether early-stage or more advanced.
A Medical-Social Support Program by the BRAIN-TEAM Social Worker
Find resources here for MDPH file support, patient rights for rare diseases, and the network of Social and Medical-Social Institutions.
A Physiotherapy Support Program by the BRAIN-TEAM Physiotherapist
The Physiotherapy Department aims to promote and provide access to self-rehabilitation for patients. The actions implemented aim to improve access to physiotherapy care: optimizing care by healthcare professionals and encouraging self-rehabilitation for patients with rare neurological diseases and reduced mobility.