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.
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.
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.
Website of the Children’s hospital in West Derby, Liverpool. Alder Hey was founded in 1914, and is regarded as the largest children’s hospital in Western Europe. The hospital is the birthplace of modern paediatric anaesthesia; neonatal surgery and children’s cardiac surgery were pioneered in the 1940’s and 1950’s.
Website of Guy’s and St Thomas’ hospital. The site provides information on the hospital Trust and the range of clinical services which the Trust offers.
The purpose of the site is ultimately to provide the UK with a huge counselling support network, enabling those in distress to find a counsellor close to them and appropriate for their needs. This is a free, confidential service that will hopefully encourage those in distress to seek help. The website also contains a number of sections on emotional disorders (types of distress section) and provides some useful statistics. Every counsellor on the site who has submitted their profile has either sent a copy of their qualifications and insurance cover to us, or is registered with a professional body online with recognised codes of ethics and practice, this way we can be assured of their professionalism.