PSP Europe is a European network of patient advocacy organizations, research centers, and clinical experts dedicated to Progressive Supranuclear Palsy (PSP) and other atypical parkinsonism disorders. Founded to coordinate efforts across European countries, PSP Europe serves as the umbrella organization for national PSP associations and works to improve patient care, advance research, and increase awareness throughout Europe.
PSP Europe is committed to:
- Promoting awareness of PSP across all European countries
- Supporting research collaboration between European centers of excellence
- Providing resources and support for PSP patients and their families
- Advocating for increased research funding for PSP and related disorders
- Harmonizing diagnostic criteria and clinical practices across Europe
- Facilitating patient access to clinical trials
PSP Europe organizes annual conferences that bring together:
- Leading PSP researchers from European institutions
- Neurologists and movement disorder specialists
- Patient advocacy organization representatives
- Pharmaceutical industry partners
- Patients and caregivers
These conferences feature:
- Research presentations on latest findings
- Clinical trial updates
- Working group meetings
- Patient and caregiver sessions
PSP Europe administers research funding through:
- Young Investigator Awards for early-career researchers
- Collaborative research grants for multi-center studies
- Travel fellowships for researchers to visit European centers
- Clinical trial feasibility grants
The organization coordinates:
- European patient registry for PSP
- Caregiver support programs
- Information resource sharing between member organizations
- Best practice guidelines for patient care
PSP Europe supports:
- Training workshops for neurologists
- Fellowship programs for young researchers
- Clinical observer programs at leading centers
- Continuing medical education courses
PSP Europe brings together national organizations from across Europe:
- PSP Association (UK) - The PSP Association is the UK's leading PSP charity, providing support and funding research since 1994
- ADELIS (France) - French patient foundation dedicated to PSP research and patient support
- Deutsche PSP Gesellschaft (Germany) - German PSP patient organization
- Associazione Italiana PSP (Italy) - Italian PSP patient association
- PSP España (Spain) - Spanish PSP patient organization
- CurePSP (United States) - International PSP foundation
- Tau Consortium - International research consortium
- University College London (UCL) - Institute of Neurology
- University of Tübingen - German Center for Neurodegenerative Diseases
- Paris Brain Institute (ICM)
- Multiple European neurology societies
PSP Europe coordinates a clinical trial network that:
- Identifies and validates European trial sites
- Standardizes patient assessment protocols
- Facilitates patient recruitment for clinical trials
- Shares data across European centers
The organization's research agenda focuses on:
- Biomarker development for PSP diagnosis and progression
- Understanding tau pathology in PSP
- Clinical trial design for PSP
- Patient quality of life interventions
- Genetic factors in PSP
PSP Europe is funded through:
- Membership dues from national organizations
- Pharmaceutical company partnerships
- European Union research grants
- Individual donations
- Fundraising events
- Established the European PSP Registry (EUPARK)
- Published European consensus guidelines for PSP diagnosis
- Funded over €5 million in research grants
- Facilitated participation in multiple international clinical trials
- Created standardized patient outcome measures for European trials
PSP Europe works with: