The director of the Huntington’s Disease Association in London met with two people in 1983. At that time it was thought that the disease was rare. No figures existed on the prevalence/incidence of the disease in this country. As the group progressed, it became obvious that the problem was far greater than first suspected.

The Huntington’s Disease Association of Ireland was formally launched in 1985 and despite a relatively low profile is now in contact with over 280 families (1999). Because of the genetic implications of the Disease each new contact from a family puts us indirectly in touch with many others who need to know their risk so they can make informed decisions regarding their own future. HDAI does not inform people of their status. Only after diagnosis has been given are we ready to answer every question the patient or his/her family might have. Each contact made is seen as individual. Confidentiality is guaranteed.

The Association is in an ideal position to use the expertise gleaned over 13 years to continue to work with the medical profession and the families to achieve positive change for the HD Community.

The Development Officer has been involved in HDAI since 1983. She worked full time for the Association from 1992 to 1994 and continues to meet with family members and their health care team; works with the media and gives talks on HD. She is responsible for the on-going support and supervision of the Executive Officer on behalf of the management committee. In August 1994 a full time worker was employed to deal with the extra work generated by publicity following the European Meeting hosted by HDAI in 1994. The Executive Officer (EO), hired in 1996, is responsible for the day to day management of the office, her range of skills are required to meet the needs of a developing professional organisation.

To accommodate its growing membership, HDAI became incorporated in 1998.