Huntington's Disease Association

18/06/2026

uniQure previously announced positive results from its new gene therapy treatment for Huntington's disease. The Phase I/II trial showed that AMT-130 slowed disease progression by 75% over 36 months.

In April, uniQure announced that it had held a pre-submission meeting with the UK's Medicines and Healthcare products Regulatory Agency (MHRA) and plans to submit a Marketing Authorisation Application (MAA) for AMT-130 later in 2026.
uniQure has now announced further progress with the US Food and Drug Administration (FDA). The FDA had previously said it would not accept the trial data. It has now confirmed that the data can be used as the main evidence in a Biologics License Application (BLA) for accelerated approval of AMT-130 as a treatment for Huntington's disease.

Cath Stanley BEM, Chief Executive of the Huntington’s Disease Association, said:
“Any news that the drug is being seriously considered for licensing is progress. However, as always, there has to be some caution. This process will take time. However, it seems both the UK and USA are open to the next stages. As a charity, we will continue to advocate for anyone affected by Huntington’s disease and will do all we can to support the community in gaining access to any potential treatments.”

You can read more about the update and timeline here:

uniQure previously announced positive results of a new gene therapy treatment for Huntington's disease. The phase I/II study has shown that the treatment - AMT-130 - causes a statistically significant slowing (75%) of disease progression when measured at 36 months.

18/06/2026

Ready player ... everyone!

HDPlay is back, but with a new twist, to bring people together through gaming.

Take on our 30-50 challenge and level up your video game skills, host a board game night, or take on sports challenge, or take part in a way more personal to you. However you choose to get involved, every fundraiser helps us show that community changes the game.

Click to find out more and sign up

HDPlay is our community fundraiser. Taking place in August it aims to bring the Huntington's community together through gaming.

17/06/2026

Join us as we explore the genetics of Huntington's disease and the role of genetic counselling.

This webinar is designed for anyone affected by Huntington's disease who is considering predictive genetic testing, as well as those who have already received results and have questions. It will also be valuable for anyone who wants to better understand the genetics behind Huntington's disease and learn more about what genetic counselling involves.

We'll take a clear, supportive look at what to expect, the options available, and how genetic counselling can help you navigate important decisions and conversations.

https://tr.ee/tP6LrU

15/06/2026

14/06/2026

These elegant amaryllis pin badges, hand-drawn by a member of the Huntington's community, make meaningful wedding favours for your guest.

Each card includes an enamel amaryllis pin badge and a printed message of thanks. A beautiful way to share your celebration while supporting us.
https://www.hda.org.uk/amaryllis-wedding-favour/

14/06/2026

Aged 18- 40 and affected by Huntington’s disease? There’s a community here for you.

Join us online Tuesday 21 July, 7:00pm - 8:00pm for our Young Adults Peer Support call which is a relaxed, informal chance to connect with others who truly understand what you’re going through.

The young adults group runs regular online calls, in-person events throughout the year, and has a WhatsApp community for ongoing chat, questions and support between sessions.

No matter where you are on your Huntington’s disease journey, there’s a place for you.
https://tr.ee/bvUlg4

14/06/2026

Did you know last year, 47% of everything that Huntington’s Disease Association did was funded by a gift in Wills?

Nearly half. From people who wanted their legacy to mean something.

If you’ve been thinking about writing a Will but haven’t got around to it, we can help. We’re offering a completely free Will-writing service with a local solicitor near you with no catch and no cost.

There is absolutely no obligation to leave a gift to us. But if you did, it would mean the world to every family living with Huntington’s disease.

Find out more here:

Last year, 47% of our income at the Huntington’s Disease Association came from gifts left to the charity in supporters’ Wills. We couldn’t continue our work without these incredibly generous donations.

13/06/2026

We're reminding you how we can support you. 💚

Carers are incredible people but being incredible doesn't mean you have to do it all alone.

The Huntington's Disease Association offers a wide range of support for carers, from our Specialist Huntington's Disease Advisers and local branches and support groups, to online carer groups, peer support and our message board at hdmessageboard.com.

Whatever you need and wherever you are on your Huntington's disease journey, we're here for you.

13/06/2026

This we want to share Susan's story.

When her mother-in-law was diagnosed with Huntington's disease, Susan realised in an instant that three generations of her family were affected including her husband Tracy, and their young daughter.

She didn't hesitate. She vowed to find the best possible care for Tracy at every stage and she did, for over a decade. She gave up her job. She managed her care, his appointment, his daily needs. But caring that hard, for that long, takes everything you have.

"My daughter had to phone an ambulance because I'd been in bed for three days. I was utterly exhausted."

Unpaid carers like Susan are the backbone of so many families living with Huntington's disease. This week we recognise them.

If you're a carer who need support, we're here.
https://tr.ee/ayQHaR