About Huntington's Disease Association
The Huntington's Disease Association (HDA) exists to support anyone who is affected by the disease and provide information and advice to professionals who support Huntington's disease families.
The Association currently has more than 7,100 members throughout England and Wales with 37 regional Branches and many local Support Groups.
HDA provides a regional care advisory service which consists of a team of advisors who offer information, care, support, advice and education to sufferers of Huntington's disease, their families and carers, and those who are at risk of the disease.
It aims to establish and maintain relationships with, and provide information and education to, relevant local social services and healthcare professionals who are involved in the care of families whose lives are affected by Huntington's disease.
This ensures that the health and social professionals who care for those with HD have a comprehensive understanding of the needs of HD families, sufferers of the disease and their treatment.
HDA operates a central information and support service from its London office and a helpline service with a regional care advisor available from Monday to Friday.
The Association also runs a research programme, which promotes and funds both medical and social research. It publishes a range of booklets, leaflets, fact sheets and information packs for families and professionals on various aspects of Huntington's disease.
A welfare grant fund is proves small grants to families and individuals in particular need, and the Association also offers a respite and residential care fund.
Our history
The Association was founded in 1971 as a self-help group with 76 members. It was then known as The Association to Combat Huntington's Chorea.
In 1993 the CASE programme was implemented. CASE - Care, Advice, Support and Education - was a programme designed to develop a network of regional care advisers throughout England and Wales.
The gene which causes HD was identified in 1993. This was a quantum leap for scientists in their search for treatment and a cure and, for the first time, a direct predictive test became available for those at risk wishing to know if they had inherited the gene.
Thirty years of working for better services for families was celebrated in 2001. With clear aims and objectives, HDA offers a service to a membership of 7100 - with 37 local Branches and many groups throughout the country - as well as raising awareness about the Association and the issues facing those affected by Huntington's disease.