by Matthew | Jan 2, 2000 | UK resources
The Ashley Jolly Sad Trust (SADS UK) is a voluntary organisation that exists to raise awareness about little known heart conditions in young people and provides information and support to families who have experienced the sudden unexpected death of a loved one due to such a condition. The Trust fundraises to purchase and donate heart monitoring equipment to detect potentially fatal heart conditions in order that once a condition is identified the patient can be referred to a cardiologist for treatment, to minimise the risk of sudden premature death.
www.sadsuk.org
by Matthew | Jan 2, 2000 | UK resources
Barth syndrome is a rare and serious genetic disorder. One of the ways it can manifest is as Cardiomyopathy. The Barth Syndrome Trust was created to better serve the needs of affected families both in the UK and the rest of Europe.
www.barthsyndrome.org.uk
by Matthew | Jan 2, 2000 | UK resources
This site has been created and is maintained by a transplant family. The information is meant to be in words that a child may understand and not guaranteed to be entirely correct in all cases. Every transplant centre has it’s own protocols and every child is unique so there will always be variations in care and treatment.
www.transplantkids.co.uk
by Matthew | Jan 2, 2000 | UK resources
Supporting families affected by DiGeorge syndrome, VCFS and 22q11.2 deletion. Max Appeal is run by parents for parents. Our events are designed to make life enjoyable and our information aims to inform and help.
www.maxappeal.org.uk
by Matthew | Jan 2, 2000 | Other resources
This is a French language website which is intended to encourage and extend the relationship between patient and doctor. The site also has an extensive directory of other organisations and provides a translation facility.
www.heartandcoeur.com
