Welcome to What is HD?
If you’ve landed here because you’ve never heard of Huntington’s disease, you’re not alone. If HD has recently entered your life, or you simply want to understand more, you’ve come to the right place.
This website is about making Huntington’s disease easier to understand in plain, everyday language, alongside the real stories of the families living with it.
What is Huntington's Disease?
Huntington’s disease (HD) is an inherited condition that damages nerve cells in the brain. It can affect a person’s movement, thinking, behaviour, emotions and, eventually, their ability to carry out everyday tasks.
If a parent has Huntington’s disease, each of their children has a 50% chance of inheriting the altered gene that causes it.
There is currently no cure, and Huntington’s is a progressive disease, meaning symptoms usually become more severe over time. But behind those medical facts are real people, partners, children and entire families whose lives can be changed by HD.
What Is HD? explains Huntington’s disease in clear, everyday language, from genetics and early symptoms to progression, family life, caring and the later stages of the disease.
Stories, awareness and action
Explore some of the projects helping families feel understood and bringing Huntington's disease into the light.
What's Up With Nan?
A gentle illustrated story created to help children understand why someone they love may move, speak or behave differently because of Huntington's disease.
Begin the storyuntil 31 August
Wear It. Start a Conversation.
T-shirts only £10 and hoodies £22 until 31 August. Wear yours, spark curiosity and help support Charlie's London Marathon.
Shop Awareness Clothing
Charlie's Journey
Follow Charlie's training and fundraising as he runs for his mum and families affected by Huntington's.
Follow his journey
Discover I Am HD
Follow the idea from its first sketch, through the voices of the HD community, to the physical puppet still waiting to be built.
Explore the projectCHARLIE’S MARATHON FUNDRAISER
Running the 2027 London Marathon for the Huntington’s Disease Association
Fundraising total last updated 14 September 2026
Not sure where to turn?
Find trusted UK support, urgent-help information and guidance on what to do next.
Here you can read real Huntington’s disease stories shared by individuals and families living with HD,
caring for someone they love, or facing the uncertainty of being at risk of inheriting the gene.
Our mission: to raise awareness
What Is HD? was created by a family living with Huntington’s disease.
We know first-hand that Huntington’s is much more than a medical definition. It affects relationships, families, carers and future generations.
Our aim is simple: to raise awareness of Huntington’s disease, explain it in clear everyday language and give real families a place to share the human side of HD.
Whether you’ve just heard the words “Huntington’s disease” for the first time, you’re living at risk, caring for someone you love, or simply want to understand more — you’re welcome here.
A What Is HD campaign
Huntington's Time to Be Seen
Huntington's disease changes entire families, yet it remains almost invisible across mainstream television and radio. Help us call for more programmes, more conversations and meaningful national exposure.
Explore the campaignYour Huntington’s Story Matters
Huntington’s disease affects every family differently.
If you live with HD, are at risk, care for someone with Huntington’s disease, or have watched someone you love live with the condition, your experience could help somebody else feel less alone.