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Huntington’s Disease Awareness Month 

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.

This year the national organisations that support people impacted by Huntington’s disease across Ireland, England and Wales, Northern Ireland and Scotland, have joined together as the Huntington’s Disease Alliance UK and Ireland. Family members from each region are sharing their stories and contributions in the collective ‘Family Matters’ campaign. Together we will raise awareness for the thousands of people impacted by Huntington’s disease across UK and Ireland.

You can find out more about the Family Matters campaign and other ways you can get involved 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 is a new national awareness campaign that has been 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. We have teamed up with project funders, Roche, to increase awareness around Huntington's disease.

The alliance alongside our communications company, M & F Health will work hard throughout May to raise awareness in a variety of ways, including -

We hope that this coming together in the name of Huntington's disease awareness will be a success. You can get involved in Family Matters by sharing your story to the Living History project.

Family Matters Website Living History Project


Meet families across Ireland and the UK supporting #FamilyMatters


  • 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