Useful Links - The Brompton Fountain

Additional Charities, Groups and Organisations

Below is a helpful list of additional charities, groups and organisations that provide information and support to families. The list covers cardiac and respiratory conditions, specific associated syndromes and other health complications.

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.

Support

Cardiac Risk in the Young aims to raise awareness of heart conditions which could lead to sudden cardiac death. CRY run several cardiac screening clinics throughout the UK, and they also offer bereavement support.

Support

Cardiomyopathy UK 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.

Support

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

Support

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

Support

The Somerville Heart 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.

Support

Heartline provides an active online forum, supporting families whatever their condition and wherever they are being treated. They can also help to provide a subsidised caravan holiday, along with any necessary equipment for your child, such as a wet suit.

Support

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.

Support

SADS UK provide information for the family & relatives of a young person who has died of Sudden Arrhythmic Death Syndrome.

Support

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.

Support

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

Support

Respiratory Support and Information

Asthma + Lung UK provide advice and support, fund world class research and campaign to improve the quality of care received by people with lung conditions.

Support

The 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.

Support

PCD Support UK support those affected by Primary Ciliary Dyskinesia (PCD), championing vital research into this rare disease since they began over 30 years ago.

Support

Associated Syndromes, Support and Information

Down’s Heart Group provides information, advice and guidance support for those with Down’s Syndrome and an associated cardiac condition, their families and carers at every stage of life from pre-natal diagnosis to adulthood.

Support

The Marfan Foundation works to save and improve lives while creating a community for all individuals with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes.

Support

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

Support

Other useful charities and organisations

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

Support

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

Support

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

Support

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.

Support

Useful books

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

Support

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

Support

Little Parachutes are picture books to help children with life’s challenges.

Support

Financial Support

Disability Living Allowance (DLA) is available to children with a disability who need help with mobility or care costs. The Department for Work and Pensions (DWP) are responsible for administering DLA, and they have specific criteria that need to be met in order to qualify. You will need to explain how your child’s needs are different to other children their age.

Support

Charities Providing Financial Support

Family Fund, React, Buttle UK, The Heinz, Anna & Carol Kroch Foundation, Destination Florida, Dreamflight, Dream Makers Children’s Charity, Over The Wall, Make-A-Wish, Rays of Sunshine

Travel Insurance

Travelling with children with medical conditions can mean you need extra protection. We’ve compiled a list of companies that other parents have recommended to us over the years:

Support

Support

Support

Support

Support

Support

Need more help?