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Path: /organizations/psp-france
Type: Patient Advocacy Organization
Location: France
Official Name: Association Française de la Paralysie Supranucléaire Progressive (AFPSP)
Website: [www.psp-france.org](https://www.psp-france.org)
Path: /organizations/psp-france
Type: Patient Advocacy Organization
Location: France
Official Name: Association Française de la Paralysie Supranucléaire Progressive (AFPSP)
Website: [www.psp-france.org](https://www.psp-france.org)
Overview
Mermaid diagram (expand to render)
PSP France (Association Française de la Paralysie Supranucléaire Progressive, AFPSP) is the national patient advocacy organization for Progressive Supranuclear Palsy and related disorders in France. The organization serves French patients and families affected by PSP, CBD (corticobasal degeneration), and related tauopathies, providing support services, educational resources, and funding research into these devastating neurological disorders.
As part of the global PSP advocacy network coordinated by CurePSP, PSP France bridges French-speaking patients and families with international research efforts while providing culturally appropriate support within the French healthcare system.
Mission and Activities
Core Mission
Patient support — Direct assistance to patients and caregivers
Medical education — Training French healthcare professionals on PSP diagnosis and care
Research funding — Supporting French and international PSP research
Public awareness — Increasing recognition of PSP in France
Advocacy — Representing French PSP patients in healthcare policy discussions
Patient Support Services
PSP France provides direct support to patients and families:
Telephone helpline — French-speaking support staff available for questions
Regional support groups — Face-to-face meetings in major cities
Online community — French-language forums and social media groups
Caregiver resources — Practical guides for managing PSP at home
Equipment assistance — Help accessing mobility and communication aids
Medical Education
The organization works to improve PSP diagnosis and care in France:
Neurologist training — Webinars and conferences on PSP for movement disorder specialists
GP education — Information for general practitioners who encounter early PSP symptoms
Nursing support — Training for home care nurses
Multidisciplinary care coordination — Helping patients navigate neurology, physiotherapy, speech therapy, and other services
Research Funding
PSP France funds research through:
Seed grants — Early-career researcher funding for pilot projects
Fellowships — Training grants for French researchers in tauopathy biology
Clinical research support — Funding for French sites participating in clinical trials
International collaboration — Joint funding with CurePSP and other organizations
French PSP Research Landscape
France has a strong tradition of PSP research, with several leading centers:
Major Research Centers
Paris Brain Institute (Institut du Cerveau, ICM):
Nicolas Lambrecq — Specialist in PSP and atypical parkinsonism
Jean-Philippe Brandel — Clinical research and epidemiology
Focus on cognitive impairment in PSP variants
Pitié-Salpêtrière Hospital:
Marie-Odile Habert — Neuroimaging of tauopathies
Clinical trial site for PSP therapeutic programs
Bordeaux University Hospital:
François Tison — Population-based studies of PSP
Clinical phenotyping of PSP variants in French cohorts
Lyon University:
Stephan Clay — Movement disorder and PSP diagnosis
Research Strengths
French PSP research is characterized by:
Strong clinical phenotyping — Detailed characterization of PSP variants
Neuroimaging expertise — MRI and PET research on French patient cohorts
Genetic studies — Contribution to European GWAS efforts
Clinical trial participation — Active recruitment for international trials
Connection to Global PSP Community
PSP France is embedded in the international PSP advocacy network:
CurePSP partnership — Formal alliance with the US-based CurePSP
European PSP Network — Collaboration with PSP organizations across Europe
International research consortia — French investigators participate in Tau Consortium activities
Clinical trial access — Links to international pharmaceutical trials for French patients
Awareness and Advocacy
Public Awareness Campaigns
PSP France conducts ongoing awareness activities:
PSP Awareness Month (annually) — Social media campaigns and events
Healthcare provider outreach — Distribution of diagnostic guides
Media engagement — Press coverage of PSP research advances
Parliamentary advocacy — Engagement with French healthcare policymakers
Healthcare System Engagement
The organization advocates for:
PSP recognition as a rare neurological disease requiring specialized care
Access to disease-modifying therapies as they become available
Multidisciplinary care teams for PSP patients
Social support services — Disability benefits, caregiver support
Resources and Materials
PSP France produces French-language materials:
Diagnostic guide — Help for patients recognizing PSP symptoms
Caregiver handbook — Practical guide to PSP daily management