PSP Germany

Path: /organizations/psp-germany Type: Patient Advocacy Organization Location: Germany Official Name: PSP-Gesellschaft Deutschland e.V. Website: www.psp-gesellschaft.de

Overview

flowchart TD
    PSP["PSP"] -->|"associated with"| Alzheimer["Alzheimer"]
    PSP["PSP"] -->|"associated with"| Als["Als"]
    PSP["PSP"] -->|"associated with"| Alzheimer_s_disease["Alzheimer's disease"]
    PSP["PSP"] -->|"expressed in"| neurons["neurons"]
    PSP["PSP"] -->|"downregulates"| SV2A["SV2A"]
    PSP["PSP"] -->|"targets"| tauopathy["tauopathy"]
    PSP["PSP"] -->|"participates in"| unfolded_protein_response["unfolded protein response"]
    PSP["PSP"] -->|"regulates"| STX6["STX6"]
    PSP["PSP"] -->|"associated with"| frontotemporal_dementia["frontotemporal dementia"]
    PSP["PSP"] -->|"participates in"| oxidative_stress_response["oxidative stress response"]
    PSP["PSP"] -->|"associated with"| Parkinson_s_disease["Parkinson's disease"]
    PSP["PSP"] -->|"regulates"| Parkinson_s_disease["Parkinson's disease"]
    PSP["PSP"] -->|"associated with"| tauopathy["tauopathy"]
    PSP["PSP"] -->|"biomarker for"| Ms["Ms"]
    style PSP fill:#4fc3f7,stroke:#333,color:#000

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:

Specialized neurological care
Multidisciplinary team support
Disability certification (Schwerbehindertenausweis)
Long-term care benefits (Pflegegrad)
Medical equipment and aids

Connection to European Network

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

Awareness Activities

Medical Education

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

Public Awareness

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

Cross-References

Progressive Supranuclear Palsy
CurePSP
Günter Höglinger (DZNE Munich)
German Center for Neurodegenerative Diseases
PSP Europe

External Links

Pathway Diagram

The following diagram shows the key molecular relationships involving PSP Germany discovered through SciDEX knowledge graph analysis:

graph TD
    ALZHEIMER["ALZHEIMER"] -->|"associated with"| PSP["PSP"]
    MOBP["MOBP"] -->|"regulates"| PSP["PSP"]
    TAU["TAU"] -->|"activates"| PSP["PSP"]
    SNCA["SNCA"] -->|"therapeutic target"| PSP["PSP"]
    TAU["TAU"] -->|"associated with"| PSP["PSP"]
    CDKN2A["CDKN2A"] -->|"associated with"| PSP["PSP"]
    UBIQUITIN["UBIQUITIN"] -->|"expressed in"| PSP["PSP"]
    TAU["TAU"] -->|"expressed in"| PSP["PSP"]
    P62["P62"] -->|"expressed in"| PSP["PSP"]
    AKT["AKT"] -->|"activates"| PSP["PSP"]
    PI3K["PI3K"] -->|"activates"| PSP["PSP"]
    MAPT["MAPT"] -->|"activates"| PSP["PSP"]
    NLGN1["NLGN1"] -.->|"inhibits"| PSP["PSP"]
    TUBULIN["TUBULIN"] -.->|"inhibits"| PSP["PSP"]
    PI3K["PI3K"] -->|"treats"| PSP["PSP"]
    style ALZHEIMER fill:#ce93d8,stroke:#333,color:#000
    style PSP fill:#ce93d8,stroke:#333,color:#000
    style MOBP fill:#ce93d8,stroke:#333,color:#000
    style TAU fill:#ce93d8,stroke:#333,color:#000
    style SNCA fill:#ce93d8,stroke:#333,color:#000
    style CDKN2A fill:#ce93d8,stroke:#333,color:#000
    style UBIQUITIN fill:#ce93d8,stroke:#333,color:#000
    style P62 fill:#ce93d8,stroke:#333,color:#000
    style AKT fill:#ce93d8,stroke:#333,color:#000
    style PI3K fill:#ce93d8,stroke:#333,color:#000
    style MAPT fill:#ce93d8,stroke:#333,color:#000
    style NLGN1 fill:#ce93d8,stroke:#333,color:#000
    style TUBULIN fill:#ce93d8,stroke:#333,color:#000

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