Specialist Huntington’s Disease Advisory Service

Our Specialist Huntington’s Disease Advisory service covers England and Wales* is delivered by our team of Specialist Huntington’s Disease Advisers.

All our specialist advisers are experienced and compassionate care management professionals. We understand that whole families may need our support.

We have a specialist adviser dedicated to helping young people with Juvenile Huntington’s disease.

Our specialist advisers support anyone who needs their help at any stage of the Huntington’s journey. They can help people living with the disease, people at risk of inheriting the disease, family members and carers, and children young people. They can even advise friends, neighbours, employers and your medical team.

Our Specialist Huntington’s Disease Advisers can help by:

  • provide advice and emotional support
  • delivering our confidential telephone helpline service
  • coordinating support with medical, health and social care professionals
  • making referrals into specialist Huntington’s disease clinics
  • advocating for the person with Huntington’s disease to get the best support
  • educating medical, health and social care professionals, meaning better diagnosis and ongoing care
  • organising and attending local support networks and carers’ group meetings
  • provide a listening ear
  • providing information resources on symptoms and how to manage them
  • connecting younger family members with our Youth Engagement Service
  • giving support for sensitive end-of-life care

If you’d like to find out how our specialist advisers could help you or someone you love, please get in touch.

Call us on 0151 331 5444 or email [email protected]

*For support outside of England and Wales you can find a list of the organisations that could help in your country via the International Huntington Association here 

Find your local Specialist Huntington’s Disease Adviser

Click here to find out how you can contact your local adviser


"My Specialist Huntington’s Disease Adviser gives us advice and makes us feel less
isolated. She makes us feel like we’re not on our own. She helps by answering our
questions, which makes us more able to cope."