Down's Heart Group
From Wikipedia, the free encyclopedia
Down's Heart Group is a UK registered charity offering support and information to individuals, families and carers relating to heart conditions associated with Down's Syndrome. Founded in 1988 by Linda Walsh with the assistance of other parents who felt there was a need for a specialised support group, DHG became a registered charity in 1992 and has continued to develop and grow according to the needs of its membership. Although UK based, the Group has contact with Down's Syndrome and congenital heart groups across the world, many of whom use and translate DHG's information sheets.
About 47% of babies born with Down's Syndrome have congenital heart defects, [1] but with today's advances in treatment most babies can have corrective surgery (usually within the first six months of life) with good outcomes. [2] For the few with more complex defects and those older individuals for whom surgery was not an option, a heart lung transplant is the only surgical option, but there are new drug treatments being developed which are showing promising results in some people.
The charity provides:
- support - telephone and email helpline, family to family contact, internet forum
- information - newsletters, information sheets, website, dvd's
- representation - membership of review groups and committees or represent views and needs of members
