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
How our community got involved
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.
Distributed factsheets
Our volunteers distributed training and awareness factsheets to healthcare settings across England and Wales.
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
Behind the gene - Becky's story
Community stories, Awareness, Campaigning
Behind the gene - Maureen's story
Awareness, Campaigning, Community stories
What we do
We support adults and families
We support children and young people
