The Huntington's community, professionals and researchers unite for our annual Huntington's conference.

Our Huntington's Community Conference returned to Crewe Hall for the third year running.  A weekend full of our community reuniting in person for a weekend of positive charity updates, emotional personal stories, research updates and engaging workshops.

Something felt extra special at this year's conference. There was a buzz in the room as guests arrived and people hugged and caught up, some not seeing each other in person for a year. There were a lot of familiar faces in the room, and there was plenty of time to catch up with old friends before the conference started. Members of the community, staff, healthcare professionals and researchers, all together as one. It was a real sense of community. 

The day continued in the main hall with a series of engaging talks followed by opportunities to network during lunch and refreshment breaks. Cath opened the conference with a positive charity update followed by the AGM minutes and accounts. Three Huntington's Disease Ambassadors each shared their personal journey with Huntington's disease and connection with the charity. These stories were both moving and relatable to many in the room.

In the afternoon, we were joined by Psychotherapists, Uruj Anujum and Donna-Marie Dodson, who hosted an interactive talk on the emotional impact of Huntington's disease. Everyone in the room was able to get involved by submitting answers to a word cloud on their presentation - this showed the real impact of how everyone in the room was affected by Huntington's. This was followed by a research update from Anne Rosser, Cardiff University who shared updates from a range of current clinical trials. One attendee said:

Great mixture of attendees. Hearing personal stories and research updates are always the highlight for me.

Those staying for the evening checked into their rooms after the conference before rejoining us for an evening of drinks, a raffle, dinner, and a live singer. On Sunday, guests return for a range of workshops focused on mindfulness techniques, crafts, and learning more about living well with Huntington’s. The weekend concludes with one final shared lunch together before heading home.

This weekend means so much to individuals and families. It's a chance to connect with others in a similar situation, learn more about research and what the charity is doing and meet with branches, support groups and other families.

Please note that future annual Huntington's conferences will not be recorded. If you are interested in hearing about what the charity has achieved and planned, research updates and personal stories, as well as the opportunity to meet with other families affected by Huntington's, then please join us next year.

Save the date - 23 and 24 October 2027

Thank you to our sponsors

A huge thank you to our sponsors, uniQure, Skyhawk Therapeutics and Alnylam for sponsoring the event and making this weekend possible.

Support from

We are grateful to Ferrer for supporting this conference with an educational grant. Ferrer has had no input into or influence over the content or programme.

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