Path: /organizations/psp-germany
Type: Patient Advocacy Organization
Location: Germany
Official Name: PSP-Gesellschaft Deutschland e.V.
Website: [www.psp-gesellschaft.de](https://www.psp-gesellschaft.de)
Overview
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PSP Germany (PSP-Gesellschaft Deutschland e.V.) is the national patient advocacy organization for Progressive Supranuclear Palsy and related disorders in Germany. The organization supports German patients and families affected by PSP and CBD, provides educational resources, funds research, and works to increase awareness of these rare neurodegenerative diseases throughout the German healthcare system.
Germany has a particularly strong PSP research community, with multiple world-class centers conducting pioneering work on tau pathology, clinical phenomenology, and therapeutic development. PSP Germany serves as the crucial link between this research community and the patient community, translating scientific advances into practical support for affected families.
Mission and Activities
Core Mission
Patient and family support — Direct services for people affected by PSP in Germany
Research promotion — Funding and facilitating German PSP research
Medical education — Training German neurologists and healthcare professionals
Awareness raising — Increasing recognition of PSP among public and physicians
Policy advocacy — Improving care and services for PSP patients in Germany
Patient Support Services
PSP Germany provides comprehensive support:
Helpline — German-speaking advisors available for patient and caregiver questions
Regional meetings — In-person support groups in German cities
Information materials — German-language guides on PSP diagnosis, treatment, and care
Care consultation — Advice on navigating the German healthcare system
Equipment support — Assistance obtaining mobility and communication aids
Research Funding
The organization supports research through:
Research grants — Funding for German investigators studying PSP
Fellowships — Training the next generation of German tauopathy researchers
Clinical trial support — Funding for German sites in international trials
Conference sponsorship — Supporting German participation in PSP meetings
German PSP Research Centers
Germany hosts several world-leading PSP research centers:
German Center for Neurodegenerative Diseases (DZNE)
Munich Site:
Prof. Günter Höglinger — PSP researcher, chair of movement disorder neurology
Focus: Clinical phenomenology, genetics, and therapeutic trials
Active site for multiple Phase 2 and 3 trials
Bonn Site:
Prof. Thilo van Eimeren — Neuroimaging of PSP and related disorders
Focus: Tau PET, MRI, and digital biomarkers
University of Tübingen
Prof. Klaus Fasshauer — Basic research on tau biology
Prof. Thomas Gasser — Genetic studies of PSP and parkinsonism
Technical University of Munich (TUM)
Prof. Jochen Klucken — Biomarker research, liquid biopsies
Focus: CSF and blood biomarkers for PSP diagnosis and tracking
Other Key Centers
University Hospital of Tübingen — Movement disorder center with PSP expertise
University Hospital Erlangen — Clinical care and research
Max Planck Institute — Basic science on tau protein
Healthcare System Context
Germany's healthcare system provides particular advantages for PSP patients:
Universal healthcare coverage — All residents have comprehensive insurance
Specialized neurology — Many academic centers with movement disorder expertise
Rehabilitation infrastructure — Extensive PT, OT, and speech therapy services
Long-term care insurance — Pflegeversicherung covers care needs
PSP Germany works within this system to ensure patients access: