We’ve been working with people with Huntington’s disease and their families for over 20 years. We’ve learned a lot about Huntington’s in that time, but the important thing to remember is every Huntington’s journey is different.
We’ve gathered together useful information and best practice to help you when working with your patients and families.
The Huntington’s journey can be vary a lot from person to person – even members of the same family. But there are some common interventions that can help at different stages.
We’ve produced a care pathway that charts the progression of the disease alongside the interventions that may be available for patients. However, services available for people with Huntington’s vary across England and Wales, so not all people will have access to every service that is recommended.
If you’d like to discuss the care pathway for one of your patients, our Specialist Huntington’s Disease Advisers can help. To contact the adviser for your local area visit our Support near you page.
We’re here to support people with Huntington’s disease, their friends and family and also the professionals who work with them. We do this through our Specialist Huntington’s Disease Advisory Service.
Our Specialist Huntington’s Disease Advisers can:
If you’d like to make a referral to our service, or would like an informal chat about Huntington’s disease, please contact your local Specialist Huntington’s Disease Adviser.
We have a dedicated specialist adviser who can give advice on Juvenile Huntington’s disease – find out more here.
Our Youth Engagement Service can also support young people aged 8-25 who are growing up with Huntington’s in the family.