Providing smart support to a community affected by a rare, devastating and highly complex condition.

HDANI signposts access to the limited medical support that is available and provides a unique emotional support network which makes a significant difference to an isolated and highly vulnerable community. HDANI currently operates with one single staff member and a small number of volunteers and receives no support from any statutory body.

 As a rare condition, Huntington’s disease inevitably joins other rare and under-resourced conditions whose numbers and low public profile relegate them to the bottom of many priority lists. Like other rare conditions, Huntington’s disease struggles ceaselessly to gain recognition and support for a condition which has a wide range of complex and specialist needs, and affects not just single individuals but entire family networks, over successive generations. One Belfast mother has lost five members of her family to Huntington’s disease in over 45 years of caring and serial bereavement (a significant number of extended family members are still at risk) and a Derry family has one single survivor from a family of five.

Unlike many other conditions, Huntington’s disease still suffers from a long history of stigmatization. Once known as ‘St. Vitus’ Dance’ because of the symptomatic involuntary limb movements, its sufferers were ridiculed, victimized and even accused of witchcraft! This stigma drove the condition underground to the point where its incidence was hidden or obliterated entirely from family histories, a legacy which still haunts the Huntington’s community.

A recent article in the esteemed medical journal “The Lancet” by the chairman of the National Institute of Health & Clinical Excellence (NICE), Professor Sir Michael Rawlins, acknowledged that the prevalence of Huntington’s disease in the UK is at least double the previously recorded statistics. Sir Michael clearly identified the main cause of this ‘invisibility ‘as the stigma that has traditionally attached to this condition. The majority of affected individuals are cared for at home until complete and total incapacity renders them unable to function, and sometimes even beyond this stage right up until end of life. HDANI believe that government needs to recognise the savings that this dedicated care represents to the NHS especially in times of economic recession.