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Huntington's Disease Association of Ireland (HDAI)

Huntington’s Disease (HD) is a life-limiting hereditary brain condition that affects a person’s physical abilities, emotions and thinking skills. Symptoms can vary significantly even between individuals in the same family. Over the course of the illness, from 15 to 25 years on average, people with HD will lose the ability to walk, talk, eat and manage their self-care and can also experience emotional and mental health changes.
Symptoms usually presents between the age of 30 – 50 years when individuals may be raising families and midway through their working lives. Juvenile onset HD may occur in 5% - 10% of those affected, with onset before 20 years of age. Each child of a parent with the HD gene has a 50% chance of developing the condition. A HD diagnosis is very distressing for the entire family: the person diagnosed; their spouse/ partner; siblings, children at risk and extended family relatives.

The Huntington's Disease Association of Ireland is a national charity which provides information and support  to individuals and families impacted by Huntington’s Disease.

The Huntington's Disease Association of Ireland was established in 1985 by family members impacted by Huntington's disease. The Association works with national and international organisations to advance services and supports and promote research.

The Huntington's Disease Association of Ireland provides information and support to people living with huntington's disease, people at risk, their families and carers, health and social care professionals and others interested in the disease.

Services include:  a national helpline, advocacy for individuals and a voice for the HD community, a family Support Officer available to support family members in crisis, access to counselling, facilitated regional support group meetings and carer workshops, an annual information meeting and respite weekend, Huntington's disease publications, quarterly newsletter and an annual magazine; support for young people; assistance with specialist seating and other assistive equipment, nformation seminars to interested health and social care personnel and support for Huntington's disease research.

Fundraisers

Contact Details

Carmichael Centre, North Brunswick Street, , , IRELAND

http://www.huntingtons.ie

Cause Registration

Revenue (Charities Unit) (CHY): 10130

Charities Regulatory Authority (CRA) : 20025656

View Huntington's Disease Association of Ireland (HDAI) on Benefacts.ie : https://benefacts.ie/Results?q=3455407