The PSP Association UK (commonly known as PSP UK) is the national patient advocacy and research funding organization for progressive supranuclear palsy in the United Kingdom. The organization operates under the umbrella of CurePSP, the US-based international PSP foundation, and serves as the primary point of contact for PSP patients, caregivers, and researchers in the United Kingdom.
PSP UK is dedicated to:
- Providing support, information, and advocacy for people affected by PSP
- Funding research into the causes, diagnosis, and treatment of PSP
- Raising awareness of PSP among healthcare professionals and the general public
- Facilitating access to clinical care and research opportunities
PSP UK operates a network of support services for patients and families:
- Helpline: Confidential telephone support for patients and caregivers
- Information resources: Printed and online materials about PSP symptoms, management, and research
- Support groups: Regional meetings connecting patients and caregivers across the UK
- Family days: Educational events bringing together families affected by PSP
The organization funds research through several mechanisms:
- Research grants: Project grants for UK-based researchers studying PSP
- Fellowships: Training awards for early-career researchers in PSP biology
- International collaboration: Partnership with CurePSP to support global research efforts
- Clinical trial promotion: Supporting recruitment for clinical trials in the UK
¶ Awareness and Advocacy
PSP UK works to increase recognition of PSP:
- Medical education: Training programs for neurologists, geriatricians, and movement disorder specialists
- Public awareness campaigns: Increasing recognition of PSP symptoms among the public
- Policy advocacy: Working with NHS and government bodies to improve PSP care pathways
The organization maintains close relationships with leading UK research centers:
PSP UK facilitates participation in clinical trials across the United Kingdom, supporting sites including:
- UCL Queen Square: Leading site for PSP clinical trials in the UK
- Royal Free Hospital: Movement disorder specialists with PSP expertise
- Institute of Neurology, UCL: Site for imaging and biomarker studies
¶ Collaboration and Partnerships
PSP UK maintains active partnerships with:
- CurePSP (international parent organization)
- Alzheimer's Research UK — Shared research initiatives
- Parkinson's UK — Collaborative awareness efforts
- UK Research Councils — Leveraging funding for tauopathy research
Current research funding priorities include:
- Biomarker development: Blood and CSF markers for early diagnosis
- Genetic risk factors: Understanding MAPT and other genetic contributions
- Clinical trial readiness: Patient registries and outcome measure validation
- Disease mechanisms: Understanding 4R-tau aggregation and propagation
- PSP UK Website
- CurePSP International Network