Huntington's Disease Association

24/08/2026

Not sure where to begin?

You might have recently received a diagnosis, discovered Huntington’s disease is in your family or reached a point where you need some extra support.

You do not need to have all the answers before contacting us. Our Specialist Huntington’s Disease Advisers can listen, help you understand your options and connect you with appropriate information and services.

Whatever stage you are at, we are here to help you find your way.

We support anyone affected by Huntington's disease from entire families to carers and from healthcare professionals to employers and teachers.

24/08/2026

Drawing therapy can help young people explore difficult emotions and communicate thoughts or experiences that may be hard to put into words.

Some young people find drawing less intimidating than speaking directly about sensitive or challenging topics. It can provide a gentler way to begin conversations and express how they are feeling.

All of our Youth Workers are fully trained in drawing and talking therapies and can use these approaches when supporting young people through the Youth Engagement Service.

All of our Youth Workers are fully trained in drawing and talking therapies and use these interventions with young people who use the Youth Engagement Service.

24/08/2026

The genetics of Huntington’s disease can feel complicated, particularly when you are deciding whether to have a predictive test or trying to understand a result.

Our free lunchtime webinar will explore Huntington’s disease genetics and the role of genetic counselling.

The session is suitable for people considering predictive testing, people who have already received a result and anyone who wants a clearer understanding of how Huntington’s disease is inherited.

Find out more: https://tr.ee/mgt85BiXYN

21/08/2026

Hear from people who understand Huntington’s disease from different perspectives.

At our Hampshire and Dorset Family Day, Ambassador Jenny McArthur will discuss living with the condition, Trustee Steve Duckett will share the realities of caring, and speakers will explore growing up in a Huntington’s family and supporting quality of life in the later stages.

The day also includes lunch, a shared activity, refreshments and opportunities to connect with others.

19/08/2026

We're at the HDPlay halfway point, now's the time to hit share!

No matter where you are in terms of donations, sharing your page regularly can help you reach even more people.

Swipe through our top tips to help you level up your fundraising, from making your page stand out to knowing when's the best time to share: https://tr.ee/r_zABJAVsT

17/08/2026

We have created a workbook to help children learn about Huntington's disease, explore their feelings and ask questions in a safe and supported way. The workbook is designed to be used with an adult who can introduce the topic when they feel the child is ready to understand more. It provides age-appropriate information and activities to help begin conversations about Huntington's disease.

To order a copy, please call 0151 331 5444 or email [email protected]

17/08/2026

“I’m Sarah, and I’m from a Huntington’s disease family.”

Behind Dr Sarah Gunn’s clinical work and research is her own experience of growing up with Huntington’s disease in her family.

In this honest online conversation, Sarah will reflect on living at risk, mental health, community and the ways her personal and professional experiences have shaped one another.

She will also discuss themes from her book, Coping with Huntington’s, which explores psychological and practical approaches to living with the disease.

Join us on 27 August from 1:00pm to 2:00pm.

https://www.hda.org.uk/events/im-sarah-and-im-from-a-huntingtons-disease-family/

14/08/2026

14/08/2026

Huntington’s disease can affect every member of a family differently, but opportunities to learn from one another are not always easy to find.

Our free Hampshire and Dorset Family Day brings together personal experiences, practical information and time to connect with other affected families.

The programme includes perspectives from someone living with Huntington’s disease, a family carer and someone who grew up in an affected family. There will also be a session on maintaining quality of life in the later stages.

A free event is for families affected by Huntington’s in Hampshire and Dorset to meet, share experiences, and access information and support.

13/08/2026

How do you explain Huntington’s disease to your child?

It can feel overwhelming, especially when you are worried about saying the wrong thing. You do not need to explain everything in one conversation.

Start with simple, age-appropriate information and allow your child’s understanding to grow over time. Small, honest conversations can give them opportunities to ask questions when they feel ready.

If you would like support starting these conversations, our Youth Engagement Service, HDYES, can help. The team provides support and age-appropriate resources for children and young people growing up in families affected by Huntington’s disease.

Find out more about HDYES through the link in our bio.