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Huntington’s Disease Family Matters 

May is Huntington’s disease Awareness Month. Each year the international Huntington's community comes together with the shared aim of increasing awareness and understanding of Huntington’s Disease.

In 2021 the national organisations that support people impacted by Huntington’s disease across Ireland, England and Wales, Northern Ireland and Scotland, joined together as the Huntington’s Disease Alliance UK and Ireland. Family members from each region shared their stories and contributions in the collective ‘Family Matters’ campaign so that together we raised awareness for the thousands of people impacted by Huntington’s disease across UK and Ireland.

The Family Matters campaign won the Charitable Campaign of the Year Award at the Communiqué Awards 2022. in addition to Best Campaign at the 2022 Gene People Awards

You can find out more about the Family Matters campaign a below:

Increasing awareness of HD and the specific issues families face will strengthen our voice in advocating for positive change. 

If you are impacted by Huntington’s disease and need support or advice, please contact us at or on 01 872 1303.

About Family Matters

Family Matters, organised by the Huntington’s Disease Alliance UK and Ireland, which consists of The Huntington's Disease Association of Ireland, Scottish Huntington's Association, Huntington's Disease Association (England and Wales) and Huntington's Disease Association Northern Ireland teamed up with project funders, Roche, to increase awareness around Huntington's disease.

The alliance alongside our communications company, M & F Health worked to raise awareness in a variety of ways, including -

See Family Matters 

Family Matters Website Living History Project


Meet families across Ireland and the UK supporting #FamilyMatters


In This Section


  • Message from President Michael D. Higgins supporting the Huntington's Disease Family Matters Campaign
  • I'm sharing a photo of my family for the Living History Campaign. I want people to understand how Huntingtons's can affect more than one generation, and the toll it can take on family carers. Family really does matter in Huntington's.
  • Huntington's Disease is inherited, it is progressive, it is disabling, life-limiting and a diagnosis no-one wants to hear. May Awareness Month wants to shine a light in the darkness. Mary McAleese, Former President of Ireland