Strengthening care: Improving health and social care for people with Huntington's disease.

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People living with Huntington’s disease are often faced with health professionals who don’t understand their condition and how to help. We’re providing training and developing guidelines for health professionals on how to offer effective support.

Expert guidance on Huntington’s disease

Too often, people living with Huntington’s disease are treated by health professionals who don’t understand their condition and how to give them the right support. We’re determined to change this. 

We have worked with expert health professionals to develop guidelines on how to provide effective support to someone living with Huntington’s disease.

The guidelines cover:

• Cognitive and behavioural changes

• End-of-life care and advanced planning

• Genetics and genetic testing

• Mental health treatment and psychosocial support

• Nutritional assessment and care

• Occupational therapy interventions

• Physiotherapy and mobility support

• Social work and community services

• Speech and language therapy

• Management of motor symptoms and movement disorders

Read the guidelines 

Coordinated care

Our report on care coordination for people living with Huntington’s disease

In May 2026 we launched our report in parliament, 'Support at every step: Improving care coordination for people living with Huntington’s disease’. This calls for all people living with the condition to have a named professional, such as a nurse, acting as a single point of contact to coordinate their care. For the report, we surveyed over 250 people affected by Huntington’s disease. Over three-quarters (76%) reported difficulties with washing and dressing, and more than one in five (21%) said they used a wheelchair. Despite living with these complex health and social care needs, almost two in three people (65%) said they did not have a named professional to coordinate care across different health and social care services.

Read the report

Improving care coordination in Surrey

From July 2021 to January 2022 a co-production project approach took place with stakeholders from Surrey Heartlands Health and Care Partnership, St George’s Hospital, local health and social care professionals, Roche, Huntington's Disease Association, patients, families and carers impacted by Huntington's.

Engagement included surveying patients, families and carers across England and Wales to understand where current care services worked well, and two Surrey-specific co-design events.

Learning from this helped shape a service delivery model for Huntington's disease patients in Surrey, and led to the successful proposal to develop and recruit to a new Huntington's disease coordinator post.

Read about the project and outcomes

Working with NICE to improve care coordination

We are an official supporter of NICE’s rare diseases quality standard.

This quality standard covers diagnosing, managing and treating rare diseases in children, young people and adults. It describes what high-quality care should look like for people with rare diseases and recommends that people with these conditions have a named healthcare professional who coordinates their care.

NICE's rare disease quality standard

Strengthening care news

Quality Assured scheme

Choosing a care home that meets both current and future care needs is one of the most challenging decisions that people with Huntington's disease, their families and carers may have to make. We want to make choosing a care home more of a positive experience for families affected by Huntington's disease. We hope the scheme will improve choice, and provide people with reassurance that core standards of care will be provided and more information to help them make a decision about the best care home for their needs.

How you can get involved

Join us and help campaign for better support for people affected by Huntington’s disease. When you sign up to be a campaigner, you'll be the first to hear about campaigns the Huntington’s Disease Association is planning and ways you can get involved. Please tick the campaign box below when you fill out the form.