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
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
- 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
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
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
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:
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
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
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
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
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
- Physiotherapy exercises — French-language physical therapy guides
- Communication aids — Information about speech and augmentative communication
- Financial assistance guide — Navigating French disability benefits
PSP France raises funds through:
- Annual fundraising events — Galas, charity runs, community walks
- Individual donations — Direct contribution program
- Memorial gifts — Donations in memory of loved ones
- Corporate partnerships — Sponsorship from French companies
- Government grants — Support from French rare disease programs