We have put together a helpful list of additional charities, groups and organisations who provide information and support to families. The list covers cardiac and respiratory conditions, as well as specific associated syndromes and other health complications such as feeding issues.
The British Heart Foundation is the biggest funder of heart research in the UK. The website has a wealth of information on various heart conditions, as well as access to BHF’s online community.
Cardiac Risk in the Young aim to raise awareness of heart conditions which could lead to sudden cardiac death. CRY run a number of cardiac screening clinics throughout the UK, and they also offer bereavement support.
The Cardiomyopathy Association is a charity that provides information & support to families affected by cardiomyopathy. They offer support nurses, information days around the country, support groups as well as affected volunteers who offer support to others.
The Children’s Heart Federation provide information & support for families affected by heart conditions via email, telephone and their website.
Heartline provide an active online forum, supporting families whatever their condition & where ever they are treated. They can also help to provide a subsidised caravan holiday, as well as a wet suit for your heart child.
Little Hearts Matter offer support & information for those affected when a child has a single ventricle heart, due to conditions such as Complex Pulmonary Atresia, Tricuspid Atresia, Hypoplastic Left Heart Syndrome, Double Inlet Ventricle or Double Outlet Ventricle.
Tiny Tickers is working to improve early detection of congenital heart defects, so that more babies receive the care they need, avoid unnecessary illness and have the chance of a better start in life.
UK based respiratory support and information organisations
Asthma UK are the UK’s leading asthma charity. They provide information & support to families as well as health care professionals. Asthma UK also campaign for awareness and better treatment for asthma sufferers.
The Marfan Foundation provide support to families, caregivers, and health providers affected by Marfan syndrome. They also work to ensure that research into Marfan syndrome receives the proper funding.
The Muscular Dystrophy Campaign are dedicated to improving the lives of people affected by muscular dystrophy and related neuromuscular conditions. They also continue to contribute to scientific research into neuromuscular conditions.
Other useful links
Action for Sick Children aim to ensure that healthcare in the UK meets the unique needs of all children & young people, and their families.
PINNT is a charity which works to support patients receiving artificial nutrition. They work to promote awareness of artificial nutrition, and also run a variety of coffee mornings to get their members together.