Useful Links

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.

UK based cardiac support and information organisations

 

BHF

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.

 

CRYCardiac 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.

 

Cardiomyopathy

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.

 

CHF

The Children’s Heart Federation provide information & support for families affected by heart conditions via email, telephone and their website.

 

 

CHAThe Children’s Heart Association is a charity based in the north of England which runs a support group for cardiac children & their families.

 

 

somervilleThe Somerville Foundation aim to ensure that grown-up congenital heart patients enjoy access to every opportunity, are free from discrimination and are fully supported throughout their life.

 

heartlineHeartline 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.

 

lhmLittle 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.

 

sadsSADS – Information for the family & relatives of a young person who has died of Sudden Arrhythmic Death Syndrome

 

 

 

tinytickersTiny 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.

 

bristishcardiovascularThe British Cardiovascular Society aims to improve the healthcare for patients with cardiovascular disease, and form a powerful voice for UK cardiovascular health care professionals.

 

 

UK based respiratory support and information organisations

 

asthmaukAsthma 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.

 

 

CFtrustThe Cystic Fibrosis Trust is a charity dedicated to promoting excellence in research & clinical care, whilst providing help and support to families affected by cystic fibrosis.

 

 

PCDThe Primary CIliary Dyskinesia Family Support Group support families affected by PCD, whilst also promoting research & awareness.

 

Associated syndromes

 

DSThe Down’s Heart Group is a charity offering support & information relating to heart conditions associated with Down ’s Syndrome.

 

marfanThe 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.

 

MaxMax Appeal! is a charity providing support and information to families affected by DiGeorge syndrome, VCFS, and 22q11.2 deletion.

 

 

muscularThe 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.

 

 

TurnerThe Turner Syndrome Society of the United States provides health-related resources to patients, families and health care professionals for the diagnosis and treatment of Turners Syndrome

 

VCFSThe Velo-Cardio-Facial-Syndrome  Educational Foundation provide support & information to affected families as well as health care providers.

 

 

 

Other useful links

action

 

Action for Sick Children aim to ensure that healthcare in the UK meets the unique needs of all children & young people, and their families.

 

 

 

blissBliss is a UK charity working to provide the best possible care & support for all premature and sick babies, and their families.

 

 

 

contactContact a Family is a charity which exists to support the families of disabled children, whatever their condition or disability.

 

 

 

pinnitPINNT 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.

 

 

ziplineZip-line is a book written for children who have had open heart surgery and are left with a ‘zip-line’

 

tubeyTubey Books are a colourful collection of storybooks that give young children with feeding tubes characters & stories they can relate to.

 

 

 

 

parachutesLittle Parachutes – Picture books to help children with life’s challenges.

 

 

 

 

Overseas/International organisations

 

cardioChildren’s Cardiomyopathy Foundation is an American group focusing on paediatric cardiomyopathy. They work to promote research and support families affected by cardiomyopathy.

 

 

 

tchinThe Congenital Heart Information Network provides information, advocacy, support and financial assistance to families affected by congenital heart defects.

 

 

heartkidsHeartKids is a charity dedicated to providing support to families affected by heart conditions, either congenital or acquired.

 

 

 

whoThe World Heart Federation works to prevent & control cardiovascular disease through awareness campaigns & actions.