Support in the East 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
Diana  - Huntington's Disease Association

Diana King

Nottinghamshire, Lincolnshire

01909 518942

diana.king@hda.org.uk

Scott - Huntington's Disease Association

Scott Putman

Northamptonshire

0186 5419909

scott.putman@hda.org.uk

Lynsey - Huntington's Disease Association

Lindsey Hughes

Leicestershire, Derbyshire

0133 2413977

lindsey.hughes@hda.org.uk

James - Huntington's Disease Association

James O'Connor

Specialist Youth Worker (Derbyshire, Leicestershire, Lincolnshire, Nottinghamshire)

0142 2411466

james.o'connor@hda.org.uk

Sirumpa - Huntington's Disease Association

Sirumpa

Youth Worker (Northamptonshire)

01992 661953

sirumpa.waranon@hda.org.uk


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 branch@hda.org.uk and we can support you in doing this.

Derbyshire support group - Treetops

The Huntington's Disease Association Derbyshire support group is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area. It's an opportunity to connect with your local adviser and meet other families living with Huntington’s disease for peer and professional support. Light refreshments and hot drinks will be available.

Where we meet

Treetops Hospice

Derby Road

Risley, DE72 3SS

 

If you need support with transport to and from the support group, please let us know. We can identify organisations that may be able to help you.

 


 

When we meet

 Every three months.

11.00am - 1.00pm


 

Key contact

Lindsey Hughes - Specialist Huntington's Disease Adviser

07706 338 786

lindsey.hughes@hda.org.uk

 


 

Specialist Huntington's Disease Adviser

Lindsey Hughes

07706 338 786

lindsey.hughes@hda.org.uk

 


 

Events and meetings

  • Tuesday 11 April 2023
  • Tuesday 11 July 2023

Northamptonshire support group

The Huntington's Disease Association Northamptonshire support group is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area. This includes individuals with the disease, family members, friends or carers.

 

People need to know they are not alone and that there are others living with this. We meet on a monthly basis to bring people together in order to support each other. Empowering people to make choices, share stories and get the help and support they need.

 


 

Where we meet

We meet at a number of different venues currently, details are communicated to those attending in advance.

 


 

 

When we meet

Please contact the Huntington's Disease Association for information on upcoming meetings.

 


 

 

Specialist Huntington's Disease Adviser

Scott Putman

07912 267875

scott.putman@hda.org.uk

Nottinghamshire branch

The Huntington's Disease Association Nottinghamshire branch is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area.This branch was set up over twenty years ago.

 

The group is open to anyone whose life has been affected by Huntington's disease. We're a sociable and friendly group who meet up regularly to provide support and friendship to each other. New members are always welcome.

 

photo for ruth


 

Where we meet

 

We meet at various venues please check our Facebook page or email us for details.

 


 

 

When we meet

Every six weeks
People are welcome to come along for a bite to eat or just pop in for a drink and a chat.

 


 

Key contact

Chair: Rachel Parker

07887373568

Secretary: Paula Cahill

nottinghamhdabranch@gmail.com

 


 

Specialist Huntington's Disease Adviser

Diana King

01909 518942

diana.king@hda.org.uk

North Lincolnshire support group

The Huntington's Disease Association North Lincolnshire support group was founded in 2018 and is run by volunteers to provide emotional and practical support to anyone affected by Huntington's disease in the local area. This includes individuals with the disease, family members, friends or carers. 

 

People need to know they are not alone and that there are others living with this. We meet on a monthly basis to bring people together in order to support each other. Empowering people to make choices, share stories and get the help and support they need.

 

A Facebook page was also set up so people can interact and keep in touch with each other and not just at the meetings. 

 


 

Where we meet

Carers Support Centre

Redcombe Lane

Brigg

North Lincolnshire, DN20 8AU

 


 

 

When we meet

Last Monday of each month (excluding May and August)

6.00pm – 7.30pm

 


 

 

Key contact

northlincolnshirehdagroup@gmail.com

 

Join our Facebook group

 


 

 

Specialist Huntington's Disease Adviser

 Diana King

 01909 518 942

 diana.king@hda.org.uk