Huntington's Disease Back to Patient Support Group list
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Description
The Huntington's Disease Association of Ireland provides consultation, information and individualised support to those diagnosed with Huntington's disease (HD), their families and their health care team.

Aims and Objectives
  • To provide specific advice to those who have the disease and their families.
  • To provide practical help where possible.
  • To foster and promote research.
  • To provide up to date information to those interested in Huntington’s Disease.
  • To avail of every opportunity to highlight the needs of our members through the media.
  • To update information regularly.
  • To help establish the true incidence / prevalence of HD in the Republic of Ireland.

Services
  • Monthly support group meetings.
  • Respite Care Fund.
  • Publications include leaflets, booklets, and fact sheets covering the many issues pertaining to HD.
  • Loan of specialised equipment such as the Kirton HD Chair, which would be too expensive for the family to afford but which enhances the quality of life of the person with HD.
  • Members receive the quarterly newsletter containing practical advice and research updates. •Annual updates are sent to interested professionals.
  • A Reference Library, which contains a substantial amount of information on the many issues pertaining to HD is available in the HDAI office.
  • HD ID cards are provided to people with HD free of charge.
  • Freefone Number 1 800 393939.
  • 24 hour contact for families in crisis is available through our minicall number 1550 124 837.
  • HDAI is now on-line. This website can be found at http://www.huntingtons.ie and our E-mail address is hdai@indigo.ie
  • HDAI maintains regular contact with world-wide discussion on HD as part of their service.
  • HDAI represents the views of HD families through International Huntington Association and European Huntington Association network.
  • HDAI represents views of HD families nationally through umbrella organisations.
  • Experts from around the world have given talks at our Members meetings, which are held twice yearly.
  • HDAI meets with health care teams and give talks to interested personnel.
  • HDAI highlights the needs of our members to the statutory services and other relevant bodies.
  • A video on HD is available for those wishing to understand the disease.

Contact
  Huntington's Disease Association of Ireland (HDAI)
Carmichael Centre,
Carmichael House,
North Brunswick St.,
Dublin 7.
Tel: 01 - 872 1303
Fax: 01 - 872 9931
Email: hdai@indigo.ie
Web: www.huntingtons.ie
 

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