HUNGTINGTON'S DISEASE ASSOCIATION OF IRELAND LIMITED
This organization has already been registered
Someone in your organization has already registered and setup an account. would you like to join their team?Profile owner : i**o@h*********s.ie
Mission Statement
Our mission is to effect positive change for people impacted by Huntington’s disease in Ireland by: Informing and supporting individuals and families impacted by Huntington’s disease and providing information to their health and social care professionals Advocating for improved services
About This Cause
Huntington’s Disease (HD) is a life-limiting neurodegenerative brain condition that affects a person’s physical abilities, emotions and thinking skills. Each child of a parent with the HD gene has a 50% chance of developing the condition. HD 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 suffer from emotional and mental health changes. Symptoms usually presents between the age of 30 – 50 years. Juvenile onset HD may occur in 5% - 10% of individuals affected, with onset of symptoms before 20 years of age. Huntington’s Disease Association of Ireland’s objectives are to promote purposes of benefit to people impacted by Huntington’s Disease (HD) in a manner that is exclusively charitable in accordance with Irish law, in particular to: • exchange and disseminate information relating to Huntington's Disease; • provide support for individuals, families and carers who are impacted by Huntington’s Disease; • co-operate with the medical, caring, social and scientific professions in the management of Huntington’s Disease. HDAI provide specific information, support and advocacy to HD patients, people at risk, carers and family members. Practical support includes: A national helpline, a family support officer, counselling, care givers workshops, support meetings, quarterly newsletters, an annual magazine, information seminars, training for health and social care professionals, supporting research, funding assistance for accessible aids, raising awareness and other support as required