British Cardiac Society

British Heart Foundation

Chain of Hope

The Children's Heart Association is a charity based in the North West of England and are members of the Children's Heart Federation.  Their aims are to provide support for families who have children with congenital heart defects and to improve facilities for children at heart units through support and funding of equipment.

Children's Heart Federation

Grown Up Congenital Heart Patients Association

Heartline

Tiny Tickers is a national charity working to improve the detection, care and treatment of congenital heart disease in babies, before birth, to give these babies a better start in life.

Cystic Fibrosis Trust

The PCD Family Support Group provides support to adults with Primary Ciliary Dyskinesia (P.C.D.) and parents of children known to have the condition.  They also bring P.C.D. to the attention of the medical profession and public and provide an up to date information service. PCD is a rare condition associated with an abnormality of cilia, which may affect the lungs, sinuses and ears. If left untreated can lead to a form of lung damage know as bronchiectasis. The mainstay of treatment is chest physiotherapy and targeted antibiotics which enables individuals to lead normal lives.

Down's Heart Group is a national, registered charity supporting families with a member with Down's syndrome and heart problems. Information is offered via the website www.dhg.org.uk, Information Packs, regular newsletters, bi-annual conferences and by calling 0845 166 8061. All our staff and volunteers are parents, grandparents or siblings of youngsters with Down's syndrome and heart defects.  Support is usually by phone or email, but we try to meet up with families when possible and also match families for mutual support where requested.

National Marfan Foundation

Max Appeal supports families affected by DiGeorge syndrome, Velo-Cardio-Facial syndrome and 22q11.2 deletion. Membership is free. We provide information, newsletters, parent contacts, family events, an annual conference and a freephone helpline.

Action for Sick Children

Bliss is the national charity that supports special care babies. Founded in 1979, Bliss is dedicated to ensuring that babies born either sick or premature survive and go on to have the best quality of life. We do this by:

providing practical and emotional support for families during an extremely difficult time, so they can give the best care to their babies.

· providing professional development opportunities for doctors and nurses and funding research to improve the care of all sick and premature babies

· raising awareness of the issues affecting sick and premature babies and fighting for essential change within government and the NHS

Contact a Family UK