• Children's Heart Association - a UK charity which provides support for families with child heart problems. The site provides a list of heart-related medical terms, what to expect in intensive care and a list of common heart drugs (see the Information menu)
   
• Cardiac Risk in the Young - a UK charity providing information and support also have website on Sudden Arrhythmic Death Syndrome (SADS)
   
• Cardiovascular Diseases Specialist Library – Part of the National Library for Health includes patient information relating to congenital heart disease.
   
• The Charlie Ramsey Research Fund – The Charlie Ramsey Research Fund was set up following the birth of our daughter - Charlie Grace Ramsey. Charlie was born with Complex Congenital Heart Defects
   
• Child Health Specialist Library - Part of the National Library for Health includes patient information relating to congenital heart disease.
   
• Children's Heart Federation - a UK charity providing information sheets on coping with all aspects of life as a family affected by heart problems and a newsletter of current issues on the subject.
   
• Children's Health Information Network - USA based site with International information provided on congenital heart disease and an extensive list of links to websites on specific heart defects  

• www.counselling-directory.org.uk - 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.
   
• DIPEX congenital heart disease module - experiences of UK patients who have congenital heart disease in video, audio or text format
   
• Down's Heart Group - a UK website which provides information on some common types of congenital heart defects (Atrial Septal Defect, Atrioventricular Septal Defect, Fallot's Tetralogy, Persistent Ductus, Ventricular Septal Defect)
   
• Grown Up Congenital Heart (GUCH) Patients Association - a UK charity offering support for families of teenagers or adults with congenital heart defects and information sheets including explanations of heart surgery that patients might undergo and advice on living with the condition
   
• Heart Children - a charity based in Ireland offering detailed information on the many types of congenital heart defect and support for families
   
• Heart Line - A voluntary organisation set up to offer help and support to children with heart disorders and their families regardless of how slight or severe the condition may be.
   
• Heart Link – a charity based at Glenfield Hospital, Groby Road, Leicester LE3 9QP which offers parental support to parents of children with congenital heart conditions.
   
• Heart Point - American site providing information on some specific types of congenital heart defects and also health tips for living with heart disease. 

• Pulse Oximitary Study Information - Pulse oximetry as a screening test for congenital heart disease in newborn babies
   
• Royal Children's Hospital - an Australian Cardiology unit with an A to Z of cardiology topics including many congenital heart

National Contacts

• British Cardiac Patients Association, 2 Station Road, Swavesey, Cambridge CB4 5QJ Tel: 01954 202022 Helpline: 0800 4792800 Email: admin@BCPA.co.uk
   
• British Heart Foundation 14 Fitzhardinge Street, London W1H 6DH Tel: 020 7935 0185 Helpline: 0845 070 8070 Offers support, local groups and a lot of information both online and in other media.
• Carers Direct Carers Direct is a national information, advice and support service for carers in England.
   
• Children's Heart Association (North West), 26 Elizabeth Drive, Helmshore, Rossendale, Lancashire BB4 4JB  Helpline: 01706 221988 Email: information@heartchild.info
   
• Children's Heart Federation - 52 Kennington Oval, London SE11 5SW Freephone: 0808 808 5000 From 9.30 a.m. till 9.30 p.m. Monday-Friday. Email: chf@dircon.co.uk Offers a helpline for families and carers of children with heart disease.
   
• Contact a family,  209-211 City Road, London EC1V 1JN Tel: 020 7608 8700 Helpline: 0808 808 3555 - free for parents and carers (10am - 4pm Mon-Fri) Textphone: 0808 808 3556 Email: info@cafamily.org.uk Supporting families caring for disabled children and children with specific health conditions, including rare disorders. Produce a range of factsheets on issues including benefits, special educational needs and social services assessments.
   
• David Phillips Appeal Fund, 4 Abingdon Bungalow, Venn Lane, Wichenford, Worcester WR6 6XY Tel: 01886 888039 fund raising for equipment and medication for heart children
   
• Down's Heart Group, PO Box 4260, Dunstable LU6 2ZT Tel : 0845 166 8061 Fax: 0845 166 8061 Email: info@dhg.org.uk
   
• Ellis van Creveld - a website written by a parent for other parents. Ellis van Creveld Foundation, Farthingale Farm, Hackmans Lane, Purleigh, Essex CM3 6RW Tel: 01621 828 914 (daytime) or 01621 829 675 (day and evening)
   
• Grown Up Congenital Heart Patient's Association - 75 Tuddenham Avenue, Ipswich, Suffolk IP4 2HG  Freephone 0800 854759 Email: info@guch.org.uk
   
• Marfan Association UK, Rochester House, 5 Aldershot Road, Fleet, Hants GU51 3NG Tel. 01252 810472 Email: marfan@tinyonline.co.uk
   
• Noonan's Syndrome c/o BDF Newlife, Hemlock Way, Cannock, Staffs WS11 7GF Tel. 01543 468888

Other Contacts

• Patron of Young at Heart - Bob Brolly