- - - - - - - - - - - - - - - - - - - - - Copyright Olivia Handley The Huntington's Disease Centre, Cardiff, Wales - - - - - - - - - - - - - - - - - - - -

Are there any support organisations? Yes, the Huntington’s Disease Association (HDA) is a registered charity working closely with the UK’s Huntington’s disease population. The HDA provide information to those at risk and affected by Huntington’s disease. The organisation offers support for carers of people with Huntington’s disease. There are a number of Regional Care Advisors (RCAs) located throughout the UK. Their role is to provide local support which includes giving information and advice to families, answering crises calls and liaising with other professional service providers. RCAs also raise awareness about local services (including respite and residential care facilities) and organise and host talks and seminars for both members of the public and health care professionals working with the disease. Contact details for the HDA are: HDA Down Stream Building 1 London Bridge London SE1 9BG Phone: 020 70221950 Fax: 020 70221953 email: info@hda.org.uk Your GP should be able to identify your local Huntington’s disease service. If you would like to be seen by a Huntington’s disease service you will need to ask your GP for a referral. You will then be given an appointment time to see a specialist working with Huntington’s disease. If you decide that you would like advice on becoming involved in research you should ask your GP, your local HDA advisor or a specialist clinician for advice. A number of research projects currently underway in the UK: click here to find out more about research in Cardiff and the rest of the UK.