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Help the 10,000 people living with rare brain disease be heard

A Milton-Keynes-based charity is launching a new campaign to help people living with rare

brain disease called Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration

(CBD) be heard.

PSPA, the only UK charity dedicated to improving the lives of people living with PSP & CBD, has developed the 10,000 Voices campaign after recent research highlighted there could be up to 10,000 people in the UK living with the diseases at one time.

In addition, 91% of the charity’s supporters shared they had not heard of PSP or CBD before

their diagnosis. As a result, launching on Rare Disease Day (28 February), the 10,000

Voices campaign aims to raise awareness of the conditions so more people can spot the

signs and symptoms, diagnosis can be made earlier and those who are diagnosed, can

receive support faster.

To help do this, PSPA is calling on everyone to get the 10,000 Voices of people living with the conditions be heard by getting involved. There are three simple ways people can get involved and raise awareness, these are:

  • Share a pledge selfie on social media in support for the campaign.

  • Take Red Flag posters highlighting the sign and symptoms, to their local GP surgery

  • lobby their local Member of Parliament show their support too.

Carol Amirghiasvand, PSPA Director of Engagement, said: “As rare diseases, PSP & CBD

are not well known, even within the medical community. Due to their rareness and similarity

to other illnesses, PSP & CBD are often not the first diagnosis people receive when they

head to their GP or Consultant to get their symptoms checked out. Most commonly, people

are initially diagnosed with other neurological conditions such as Parkinson’s disease.

“We want to aid early diagnosis and access to appropriate services so people living with

PSP & CBD receive the support they need to manage their symptoms and plan ahead. To

do this, we need help to have the 10,000 Voices heard and the signs and symptoms easily

identified. We’ve a range of information and resources available as well as three simple calls

to actions to make it easy for people to share and raise awareness on Rare Disease Day

and in the future.”

To learn more about PSP & CBD and to download useful resources, please visit:

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