At that time it was thought that the disease was rare. As the group progressed, it became obvious that the problem was far greater than first suspected. 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. 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 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. To accommodate its growing membership, HDAI became incorporated in 1998.