You can help to raise HD awareness across UK and Ireland


Scottish Huntington’s Association is marking Huntington’s Disease Awareness Month in May with a UK and Ireland-wide campaign in partnership with Huntington’s Disease Association, Huntington’s Disease Association Northern Ireland, and Huntington’s Disease Association of Ireland.

As the newly-formed Huntington’s Disease Alliance, these combined efforts will raise awareness about the impact of Huntington’s disease on families and the work of each organisation to provide lifeline care and support.

Family members from all over the UK and Ireland have taken part in campaign development workshops, and the wider HD community is now being invited to get involved by sharing experiences, insights, photos and messages as part of a unique ‘living history’ project.

This enables people and families affected by Huntington’s disease to ensure that they – the people the very heart of this vital campaign – have their voices heard and their stories told in a way that works for them.

Contributions will feature in a specially-created online site, and the length, detail and form of each submission could include, for example:

  • A poem about or a self-penned piece.
  • A selfie with family, friends or support bubble.
  • A message – or even just your family name and region as a show of support.
  • An inspirational or motivational quote.
  • A drawing or piece of art.
  • A picture of something that brings family or support networks to mind.
  • A quote from a favourite book.
  • An old or new family photo.
  • An image of footprints or handprints or something that is personal.
  • Extracts from a letter or note.
  • An anonymous message of support.


People can contribute to the site with or without their names being included.

This is an exciting opportunity to bring the HD community together, build wider understanding about Huntington’s disease, and highlight the resilience and strength of people and families.

To find out more or to contribute, please email the M&F Health communications team at who are working with us, as part of the Huntington’s Disease Alliance, to create and curate the Living History site. You can also visit the project information guide here.

Please take part in our short survey for families and individuals

In advance of Huntington’s Disease Awareness Month in May, and as part of our work for the Family Matters campaign, we’re carrying out a community survey to understand the impacts of living with Huntington’s disease.

This survey is open to you if you have direct experience of Huntington’s disease, whether you have a diagnosis or gene positive test yourself, if you are at risk, if you care for a loved one with Huntington’s disease or have somebody in your family who has Huntington’s disease. We’d also like to hear from you if you have tested negative yourself.

Responses to this survey are completely anonymous and it should take only five minutes to complete at Thank you!

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