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Huntington's Disease Association

Huntington's Disease Association
Healthcare and medical research

Huntington's Disease Association

Joined up care

Huntington's disease is an inherited degenerative illness that causes dementia along with a number of physical problems. Sufferers and their families need support from a variety of different healthcare professionals. However, finding out what services are available and then taking a person with Huntington's disease along to a variety of medical appointments can be an enormous challenge for many families.

In 1995, the Huntington's Disease Association (HDA) established its regional care advisory service. Today, there are 22 regional care advisors based around the country who help people with the disease and their families to find the services that they need.

The HDA was also influential in setting up a number of multidisciplinary clinics. Around the UK these clinics gather together a range of healthcare workers such as psychiatrists, occupational therapists and geneticists, so that families can access a range of specialist advice in one visit.

Juliet Burnett, companies and trusts fundraiser at HDA, says: We are not trying to reinvent the wheel. There are good healthcare services available for these people. We are making sure that people know what is available to them and ensuring that they receive a joinedup approach to their care.

These innovations have made it possible for many people with Huntington's disease to remain at home with their families without the need for residential care. The people with the disease have a better quality of life and their carers feel less isolated.

Cath Stanley
Head of care services 
Huntington's Disease Association
108 Battersea High Street
London, SW11 3HP
020 7223 7000
Reg no. 296453
www.hda.org.uk

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