PSP Association (PSPA)

PSP Association (PSPA)

At a glance

Causes

  • Health and well being / research and care

Other details

Organisation type: 
Charity
Geographical remit: 
National - Britain

Objectives

Approximately 4,000 people in the UK currently live with a diagnosis of PSP or CBD.  Research in 2019 estimated that as many as 10,000 people are living with either disease. The gap in diagnosis rates to possible actual rates demonstrates the scale of the challenge for PSPA to set out a road map to raise awareness for improved diagnosis, care, and a better quality of life. 

Today, with a growing team of staff and volunteers, we support over 6,000 people living with a diagnosis, their carers, and health and social care professionals via the PSPA helpline, local groups, literature, support grants and national events.   

Alongside providing support and information, the Association has invested hundreds of thousands of pounds in research over the past 30 years to improve the understanding of PSP and CBD, and to make progress towards treatments and ultimately prevention and/or a cure.  We know that many more people need our support and want the hope that treatments will exist in the future.   

With awareness and diagnosis of the disease remaining low there is still a lot of work to do.  Ensuring a greater awareness and understanding amongst Health and Social Care professionals is key to ensuring an accurate and timely diagnosis, and an improved quality of life. 

Our purpose is to create a better future for everyone affected by PSP and CBD. 

 Our goals are to: 

  1. Enable people with PSP & CBD and their families to live their best lives possible with high quality support and information. 
  1. Improve the quality of life of people living with PSP & CBD through research, education and awareness raising. 
  1. Put people living with PSP or CBD at the heart of what we do. 

Activities

We are a national charity providing expert support and information to people living with these conditions, their families and Health and Social Care Professionals. We fund research into the causes and treatments of the disease and raise awareness to improve diagnosis.

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