Support in the West Midlands

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


01432 800869

Chris - Huntington's Disease Association

Chris Platt

Shropshire, Worcestershire


Lynsey - Huntington's Disease Association

Lindsey Hughes


0133 2413977

Poppy - Huntington's Disease Association

Poppy Hill

West Mids Metropolitan County, Birmingham, Dudley, West Bromwich, Sandwell, Sutton Coldfield, Solihull, Coventry, Warwickshire

0121 426 1015

Jack - Huntington's Disease Association


Youth Worker (Warwickshire, Worcestershire)

0117 2449487

Ian - Huntington's Disease Association


Youth Worker (Shropshire, Staffordshire, West Midlands)

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 Staffordshire branch

The North Staffordshire branch of the Huntington’s Disease Association was established in 1993 by volunteers who all had a link with Huntington’s disease. One of the founder members, Sue Tams, continues to be our Chair and other founder members remain active members of the group.


The group strives to help local families across Stoke-on-Trent and North Staffordshire affected in some way by Huntington's disease.


In addition to offering support and sharing our knowledge gained through experience of the condition, Sue Tams is also very active within the local health economy helping ensuring that Huntington's disease is considered at meetings to do with such things as reforming and commissioning mental health services.



Where we meet

The Community Room
Tesco Extra Store
Clough Street
Stoke-on-Trent, ST1 4LS


When we meet

Third Wednesday of the month

7:30pm to 9:15pm

Please contact Glenys White or Sue Tams on the below details for further information or if you would like to be met at the front door.



Key contact

Chair: Sue Tams

01782 642905  

Secretary: Glenys White




Specialist Huntington's Disease Adviser

Lindsey Hughes


Shropshire and Mid Wales branch

Welcome to the Huntington’s Disease Association Shropshire and Mid Wales Branch. We have been offering support and advice to local people affected by Huntington’s disease for over two decades. We meet at least quarterly. We aim to advise, support and befriend those in need, form links with others in the community and, of paramount importance, replace isolation with a sense of belonging.

We welcome people from Shropshire, Powys and any surrounding locations where there is no local branch or support group.

We organise social events, such as boat trips and coffee afternoons, fundraising events, occasionally arrange guest speakers and welcome the local Specialist Huntington’s Disease Adviser to our meetings.



Where we meet

Hamar Centre

Royal Shrewsbury Hospital



When we meet




Key contact

Tamworth support group

The Huntington's Disease Association Tamworth support group is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the South of Staffordshire and surrounding areas.


The group was set up by four ladies who have different connections to the disease. We meet every six weeks on a Sunday afternoon for an informal cuppa and cake. The meetings offer all the opportunity to share new information and tips on how they have resolved issues they have faced.


We also have 'suggestions’ box to enable attendees to identify topics they would like further information on. This information will be sought between meetings and shared at the next meeting. Health and Social Care professionals will also be invited to future meetings to provide talks on specific topics identified.


Alongside the six weekly support groups we will also be holding fundraising and social events to enable those affected by Huntington’s disease to socialise in a safe and friendly environment.

Where we meet

Fazeley Town Hall 
Lichfield Street
Tamworth, Staffordshire 
B78 3QN

When we meet

We meet every six weeks on a Sunday afternoon

1.30pm - 3.30pm

  • 21 January
  • 03 March
  • 14 April
  • 09 June
  • 21 July
  • 01 September
  • 13 October 
  • 24 November



Key contact

Sarah Lowes



Specialist Huntington's Disease Adviser

Lindsey Hughes


West Midlands branch

The Huntington's Disease Association West Midlands branch is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area.


We have been offering support and advice for over 40 years to local people affected by Huntington’s disease. We have regular support meetings which are very informal and welcoming. The meeting offers the opportunity where people can share tips and ideas of how to deal with issues, they may be facing with their loved ones in a safe kind environment. We welcome the local Specialist Huntington’s Disease Adviser to our meetings. 


Types of support we offer

  • Health and social care professionals join our meetings to give talks about various topics around Huntington’s disease
  • We organise events and social activities to fundraise for Huntington's Disease Association and promote awareness of Huntington’s disease
  • Visits to local attractions, organising walks and other events
  • We have a Welfare Fund that provides limited emergency help to Huntington's disease families in our area



Where we meet

TouchBase Pears (Sense)

750 Bristol Road

Selly Oak

Birmingham, B29 6NA



When we meet

We aim to hold face to face support meetings six times a year on Saturdays when circumstances permit.

Dates and times are announced on this webpage and via email or post to those on our contacts list. Additional social events are advertised in the same manner.



Key contact

Secretary: Paula Aubrey



Specialist Huntington's Disease Adviser

 Poppy Hill

 0121 426 1015


Meetings and events

  • Saturday 11 May 2024
  • Saturday 22 June 2024
  • Saturday 07 September 2024***
  • Saturday 19 October 2024
  • Saturday 14 December 2024 

These get-togethers are for everyone who has any connection with Huntington’s disease, including, family, friends, carers. We always try to make time to just chat, ask questions and hear about any news from the wider Huntington's community.


We have requested a hot drink for everyone on arrival (snacks are usually on sale in their café, also on the ground floor and adjacent to the library area).


We meet in a room on the ground floor to the left of the Reception desk.


*** This date will be a fundraising and awareness afternoon with some stalls and a variety of table-top games and activities. It will take place at Spitfire House, 10 High Street, Castle Vale, B35 7PR from 1.00pm - 4.00pm.

Getting there

There is a secure car park with ample spaces and controlled by barriers and intercom system - is behind the building and accessed from Selly Wharf, off Elliot Road. 


Selly Oak railway station (on the West Midlands Railway Central Line) is only a few yards away; bus stops for the local routes are also nearby.