The PSPA are part of a developing group in NI, the Rare Disease Partnership. It's an umbrella group with the aim of supporting individuals affected by rare diseases (like PSP and thousands of others) and the voluntary organisations.
In partnership with the Patient Client Council, we're launching a survey; trying to find out people's experience of the process of diagnosis.
Get your voice heard.
Tell your story, your experience of the system.
Let politicians and policy makers find out the reality of your situation.
The greater the response to the survey, the greater the impact will be!
You can complete the survey online (about 10 minutes max)
Or you can phone 0800 917 0222 and speak to real people, Sarah or Richard.