0

Helpline:

0151 331 5444

Donate now

  • Information and Support
    • Huntington's disease
      • What is Huntington's disease?
      • What causes Huntington's disease
      • Huntington's disease symptoms
      • Juvenile Huntington's disease
    • Getting help
      • For carers
      • At risk
      • Genetic testing
      • Tested positive
      • Starting a family
      • Showing symptoms
      • End of life
      • Bereavement
      • Children and young people
      • Juvenile Huntington's disease
      • Tested negative
      • Specialist Huntington’s Disease Advisory Service
      • Branch and support groups
    • Support near you
      • North West
      • North East
      • Yorkshire and the Humber
      • Wales
      • West Midlands
      • East Midlands
      • East of England
      • London
      • South West
      • South East
      • Quality assured care home directory
    • Blogs and stories
    • Research
      • Research news
    • Keep up to date
    • Information resources
      • Events
      • Guides and leaflets
      • News
      • Videos and webinars
  • Events
    • Support
    • Research
    • For families
    • For professionals
    • Youth engagement service
    • Campaigning
    • Monthly events
  • Get Involved
    • Ways to donate
      • Make a donation
      • Join our lottery
      • Leave a gift in your Will
      • Donate in memory
      • Payroll giving
      • Donate in celebration
      • Give the perfect gift
      • Trusts and foundations
    • Fundraising and events
      • Find an event
      • Odds And Socks Day
      • Register your fundraiser
      • Fundraising ideas
      • Corporate fundraising
      • Fundraising materials
      • Fundraising FAQs
      • Fundraising awards
      • Create your own posters
    • Volunteering
      • Branch and support groups
      • HD Voice
      • HD Youth Voice
      • Ambassadors
      • Volunteers hub
    • Campaigning
      • What we are campaigning for
      • Huntington's disease awareness month campaigns
      • BBC Lifeline
      • Huntington's in parliament
      • Cost of living
    • Studies and research
      • How we work with commercial organisations
      • Research studies
      • Recruiting for a study
      • Research we fund
      • Enroll-HD
    • Membership
  • Professionals and Training
    • About Huntington’s disease
      • What is Huntington's disease
      • Huntington's symptoms
      • Genetics of Huntington’s disease
      • Juvenile Huntington's disease
    • Resources for professionals
      • Guides and leaflets
      • Videos and webinars
      • National guidelines
      • External resources
    • Working with patients and families
      • Patient journey
      • Care pathway
    • Care home 'Quality Assured' accreditation
      • What is care home accreditation?
      • Quality assured care home directory
    • Events and training
  • About Us
    • Who we are
      • Our governance
      • Meet the executive council
      • Meet the team
      • Our vision, mission and values
    • What we do
      • Specialist Huntington’s Disease Advisory Service
      • Our youth engagement service
      • Huntington’s disease training courses
    • Annual reports and accounts
      • Annual report and accounts 2023-2024
      • Annual report and accounts 2022-2023
    • AGM 2025
    • Work for us
      • Benefits of working with us
      • Current vacancies
    • Our strategy
    • Magazine and newsletters
    • Contact us
  • Shop
  • Message Board

View navigation

Message Board

  • Home
  • Information and Support+
    • Huntington's disease
    • Getting help
    • Support near you
    • Blogs and stories
    • Research
    • Keep up to date
    • Information resources
  • Events+
    • Support
    • Research
    • For families
    • For professionals
    • Youth engagement service
    • Campaigning
    • Monthly events
  • Get Involved+
    • Ways to donate
    • Fundraising and events
    • Volunteering
    • Campaigning
    • Studies and research
    • Membership
  • Professionals and Training+
    • About Huntington’s disease
    • Resources for professionals
    • Working with patients and families
    • Care home 'Quality Assured' accreditation
    • Events and training
  • About Us+
    • Who we are
    • What we do
    • Annual reports and accounts
    • AGM 2025
    • Work for us
    • Our strategy
    • Magazine and newsletters
    • Contact us
  • Shop

Basket0

Latest news

Rare Disease Report

Latest News stories...

Huntington's disease volunteers

Get involved this Volunteers' Week

Read more

Charles

A postcard from Palm Springs 2025

Read more

North West Genetic Councellor development day

Strengthening care: Genetic Councellor development day

Read more

View latest newsfeed

Coordinating Care: Learning from the experiences of people living with rare conditions


The Genetic Alliance UK have worked with their members including ourselves and people in the Huntington's community to demonstrate the value of care coordination and the impact of its absence. The benefits of care coordination are clear for people living with rare conditions and their carers, parents or relatives, for healthcare professionals, but also much more broadly for healthcare budgets, and providers of services outside of the healthcare environment.

Read the report 

Inspired by our community

Accessibility and Language

Information and Support

News

Events

Blogs

Accessibility Statement

© 2025 Huntington's Disease Association

Liverpool Science Park IC1, 131 Mount Pleasant, Liverpool, L3 5TF
Huntington's Disease Association - a charity registered in England and Wales.
Registered charity number 296453 / Company number 2021975.

fundraising-regulator
JustGiving-logo-EPS-RGB
Give as you live logo
Lottery

Privacy policy | Terms and conditions | Shop terms and conditions

Website by See Green

Item added to basket.

View basket

Continue