The Association is committed to supporting people affected directly by Huntington’s Disease. Literature is produced on many aspects of the disease for families and professionals. Awareness raising events such as conferences are organised nationally and locally, together with social fun events, fund raising activities and summer camps for young people. Local branches and support groups form a significant part in these events. As Huntington’s Disease is relatively rare, many health care professionals may only come into contact with one family. It is important for these professionals to get specialist help and advice from a Specialist HD Adviser. The Specialist HD Adviser has acquired much of her/his knowledge and understanding of the disease from shared experiences of families and health care professionals across the county. The key role of the HD Specialist Adviser is to:
- Provide a listening ear.
- Help families receive support, care and advice that they want and need to enable them cope.
- Access information on benefits, specialist equipment, respite, holidays and so on.
- Increase knowledge and skills.
- Assist in co-ordinating care through contact with health and social care professionals and non-statutory services.