This year's theme was Behind the Gene. 

The invisible challenges and untold stories of Huntington’s disease.


This May, we showed the many faces and many lives behind Huntington's disease. 

Too often, people affected by Huntington's disease find themselves educating the public about their condition. 

Not everyone has heard of Huntington’s disease, and that includes healthcare professionals. A staggering 85% of 150 people asked in a recent survey had to educate a doctor, nurse or healthcare professional about Huntington’s disease. This is just one of the many challenges the Huntington’s community faces. We are trying to change this.

What we achieved 

Awareness Month  Evaluation Graphics (4)

How our community got involved

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Hosted pop up events

Volunteers are hosted events across England and Wales in their local area to raise awareness. If you are interested in holding one in your area you can find out more and register your event below.

awareness 1

Distributed factsheets

Our volunteers distributed training and awareness factsheets to healthcare settings across England and Wales.

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Shared their stories

People shared videos and stories with us about what they wish others knew about Huntington's disease.

Read the challenges and stories from the Huntington's community

Becky - Behind the gene

Behind the gene - Becky's story

Community stories, Awareness, Campaigning

Read more

Maureen - Behind the gene

Behind the gene - Maureen's story

Awareness, Campaigning, Community stories

Read more

What we do

Huntington's disease

We support adults and families

Support near you

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We support children and young people

Youth engagement service

Training

We support healthcare professionals

Professionals and training

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