Path: /organizations/psp-germany
Type: Patient Advocacy Organization
Location: Germany
Official Name: PSP-Gesellschaft Deutschland e.V.
Website: www.psp-gesellschaft.de
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
- 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
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
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
Germany hosts several world-leading PSP research centers:
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
- Prof. Klaus Fasshauer — Basic research on tau biology
- Prof. Thomas Gasser — Genetic studies of PSP and parkinsonism
- Prof. Jochen Klucken — Biomarker research, liquid biopsies
- Focus: CSF and blood biomarkers for PSP diagnosis and tracking
- 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
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:
- Specialized neurological care
- Multidisciplinary team support
- Disability certification (Schwerbehindertenausweis)
- Long-term care benefits (Pflegegrad)
- Medical equipment and aids
PSP Germany is part of the European PSP advocacy network:
- CurePSP partnership — Formal alliance with international organization
- European PSP organizations — Collaboration with PSP associations across Europe
- Research networks — German investigators in Tau Consortium and other consortia
- Clinical trials — Connection to international pharmaceutical trials
PSP Germany conducts ongoing education:
- Neurologist training — Workshops on PSP diagnosis for movement disorder specialists
- GP education — Information for family physicians
- Nursing education — Training home care nurses
- Multidisciplinary team — Coordinating across neurology, PT, OT, speech, social work
- Awareness campaigns — PSP Awareness Month activities in Germany
- Media outreach — Press coverage of PSP research
- Patient conferences — Annual meetings with expert speakers
- Social media — German-language PSP community on Facebook, Instagram
¶ Fundraising and Support
PSP Germany raises funds through:
- Donations — Individual contributions from supporters
- Memorial gifts — Donations in memory of PSP patients
- Events — Charity walks, galas, and community fundraisers
- Corporate partnerships — Sponsorship from German companies
- Research grants — Funding from German research foundations