Huntingtons Disease Association Northern Ireland
Nonprofit Organization Management - Belfast, Northern Ireland, United Kingdom
Huntingtons Disease Association Northern Ireland Employees
Huntingtons Disease Association Northern Ireland Details
Huntington's Disease (HD) is a rare, inherited and highly complex neuro-degenerative disorder, with a fluctuating progression, affecting both mind and body. It is caused by a faulty gene which progressively destroys the central area of the brain affecting all aspects of an individual's life including physical, cognitive and behavioural processes. Because the damage caused by HD begins inside the brain, an individual with HD may look relatively able bodied until the later stages of the disease. As well as the physical and mental symptoms of HD, many years of fear, shame and isolation caused by stigma has had a devastating effect on individuals and their families over successive generations. The Huntingtons Disease Association Northern Ireland (HDANI) was established in 1985 by family members seeking support in dealing with the disease. Since that time it has developed into a registered charity with a number of support groups and family initiatives throughout Northern Ireland. HDANI is in an exciting transition having hired its first manager to lead the Association into the next phase of its development. The manager is supported by a voluntary Board of Directors, a Members Service and Development Officer and a range of volunteers throughout Northern Ireland. Vision Statement: HDANI's vision is for Huntington's Disease families to remain active, involved, connected, valued and supported and leading as independent and normal a life as possible. Aims and Objectives: Strategic Themes: Connecting Families Building a Strong Voice Improving Professional Support Working for Effective Treatments and Cures
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