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Family Matters Survey

Huntington’s Disease Awareness Month is a time to raise awareness of Huntington’s with the wider public. As part of  the Huntington's Disease UK and Ireland  Family Matters campaign we want to acknowledge the unique impact of Huntington’s disease, and to help people understand the challenges that families face. 

In the lead up to Huntington’s disease awareness month in May, we carried out a UK and Ireland wide community survey to understand the impact of living with Huntington’s disease. This survey was open to everyone who has a direct experience of Huntington’s: people with a diagnosis or a gene positive test result, those at risk, people with a negative gene test result and people who have somebody in their family who has Huntington’s. 

Have a look at the UK and Ireland Survey Results here and please share these results if you can – we feel it is important that people understand more about what people go through when they are living within a Huntington’s family. HD Family Matters Survey results specific to Ireland are available here

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