Our Specialist Huntington’s Disease Advisory service covers England and Wales*.
All our Specialist Huntington's Disease Advisers are experienced and compassionate care management professionals. We understand that whole families may need our support.
We also 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, children and young people. They can even advise friends, neighbours, employers and your medical team.
"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."
Our Specialist Huntington’s Disease Advisers can help by:
- providing 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 - HDYES
- 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@example.com
Find your local Specialist Huntington’s Disease Adviser
Want to speak to our helpline in another language? You can talk to us through Language Line. Find out more below.
*For support outside of England and Wales, you can find a list of the organisations that can help in your country. Please click below to find out more.
If English is not your first language, or you would just prefer to talk to us in another language, you can call 0151 331 5444 and ask to speak to us through the interpreting service Language Line.
What is Language Line?
Language Line is an interpreting service. Their professional interpreters offer over 240 languages. Using this service enables us to have a three-way helpline call with you.
Please note that you will need to call us to request this service. If you are not able to make the call yourself, you can ask someone to do this on your behalf.
Language Line do not take or keep any notes from the call, so you can be reassured that they are not recording your call in any way.
- Call the helpline on freephone 0151 331 5444 between 9.00am and 5.00pm, Monday to Friday.
- Tell us that you would like to speak to us in another language. We will need to know your phone number to call you back on, and your first name. Please be aware that we will pass these details on to Language Line (in order for them to call you back).
- If you are not able to do this in English, you can ask someone to do this on your behalf. However, you will need to give that person permission to pass on your name and contact number. Once we have your details, we will end the call with you.
- We will contact Language Line. We will give them your first name and your phone number, and let them know what language you would like to talk to us in. Language Line will call you back.
- We can then talk to you through Language Line’s interpreting service. What you ask us will be translated by Language Line to us, and our reply will be translated back to you.
- At the end of the call you just hang up the phone as usual.
- You will not be charged for this call-back.
Huntington's Associations around the world
For information or support outside of England and Wales you can find a list of international organisations via the INternational Huntington Association.