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

 

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.

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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.

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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.

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Recommendations

ALD Imaging Protocol

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Neurocognitive Evaluations Protocol

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