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Charity Registration No. NIC104676
About Huntington's Disease Association Northern Ireland
HDANI is the only source of disease-specific expertise in Northern Ireland providing support, information, advice and social connections to those living with the impact of Huntington’s Disease. HD is an inherited neurological disorder: if either parent has it, his or her child has a 50-50 chance of getting it. Huntington’s disease is caused by an overproduction of certain proteins in the brain as the result of a faulty gene. Symptoms, which usually appear after age 30, generally include dementia, chorea (jerky, random movements of the body), poor coordination, cognitive issues, depression, memory loss and behavioural issues. Although there are a number of clinical trials underway there is currently no cure for HD. People with adult onset HD usually live for 15-20 years once the symptoms begin to appear. There is a rarer, more aggressive, form of HD which affects children known as Juvenile HD and those with JHD rarely live beyond their late teens.
HDANI run regional support groups, provide telephone/online and face to face advice, practical and emotional support as well opportunities for families to connect through our events and befriending services. We develop HD specific resources, run a website and social media channels. We also work closely with medical professionals to advocate for the most effective care for our clients and lobby the Executive for improved and efficient services. We provide training and awareness raising events and keep our members informed of the latest research and medical advances in the quest for effective treatments and ultimately a cure.
Learn more at www.hdani.org.uk
