Support in Wales

We are here to support you whether you are looking for peer support or advice from a professional. Below you can find out more about our Specialist Huntington's Disease Advisers and local branch and support groups.

Specialist Huntington's Disease Advisers

Our specialist advisers are experienced and compassionate care management professionals. 

They 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 or young people. They can even advise friends, neighbours, employers and your medical team.

Our Specialist Huntington’s Disease Advisers can help by:

  • providing a listening ear, 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
  • organising and attending local support networks and carers’ group meetings
  • 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
  • educating medical, health and social care professionals
Carol Davies - Huntington's disease adviser

Carol Davies

South Wales, Mid Wales

01432 800869

Delia - Huntington's Disease Association

Delia Roberts

North Wales (Anglesey, Conwy, Denbighshire, Flintshire, Wrexham, Gwynedd)

0124 8661231

James - Huntington's Disease Association

James O'Connor

Specialist Youth Worker (North Wales)

0142 2411466


Jack - Huntington's Disease Association

Jack Crockford

Youth Worker (Mid and South Wales)

0117 2449487

Ian - Huntington's Disease Association


Youth Worker (North Wales)

01922 661227

Branch and support groups

You can click on each branch and support group to find out more about the groups and where they meet. If you can't see one in your area and you are thinking about setting one up, please email and we can support you in doing this.

North Wales branch

The North Wales Huntington's Disease Association branch is here to support people with or affected by Huntington's disease including carers, family members and those at risk.


This local branch was formed in 2010. Initially, the branch was formed with members from Anglesey and Gwynedd. During the past two years, we have raised a considerable amount of awareness of Huntington’s disease through the commitment and dedication of branch members and our Specialist Huntington's Disease Adviser. This has allowed the group to expand and welcome new members from the counties of Conwy and Denbighshire.


Visit our Facebook page



Where we meet

We meet at Table Table, Parc Menai, Bangor, Gwynedd, LL57 6BW, and we also have social events at the Premier Inn Restaurant/Pub on Parc Menai.



When we meet

Meetings held every three or four months. There are no meetings during July and August.



Key contact

Branch Secretary: Catrin Roberts


Branch Treasurer: Trevor Jones



Specialist Huntington's Disease Adviser

Delia Roberts

0151 331 5444

South Wales support group

The South Wales Huntington’s disease support group is a small friendly group who get together once a month to chat, support each other and share helpful information. Whatever your connection to the disease, whether at risk, undergoing testing, tested, diagnosed positive or negative, symptomatic, carer, family member, friend or professional you are welcome to join us. 


The group is focused on the needs of the members and between us we have a wealth of experience to share. So often people feel very alone with this disease and the aim of the group is to meet others in similar situations, feel listened to and supported. 


We also have a facebook group where members can chat with each other between meetings. If you would like to speak to me directly then please contact me via email and I can arrange to contact you either on the phone, in person or electronically.


Join our Facebook group



Where we meet

Insole Court

Fairwater Road


Cardiff, CF5 2LN

The site is fully accessible and has disabled parking as well as an on-site cafe and beautiful grounds to explore. If you need help with transport let me know and we can see if other members are able to help out.



When we meet

Generally the last Sunday of the month at 2:30 - 3:30pm.

Please contact the group before attending so we can plan accordingly.



Key contact

Support Group Facilitator: Steph Lynch



Specialist Huntington's Disease Adviser

Joanna McCabe

0770 633 8783