Congenital Heart Disease

UK sources of information and / or support

 Children's Heart Federation

CHF provide a range of information including material produced by British Heart Foundation and other groups, about all aspects of bringing up heart children, from coping with siblings, employers and hospitals, to factsheets explaining the most common heart conditions and relevant treatments, to short leaflets about looking after your child's teeth.

 Children's Heart Association

A support group run by families and friends of cardiac children for families with, or who have had, children with heart disorders.

 Scottish Association for Children with Heart Disorders

A support group run by families of cardiac children, for families with, or who have had, children with heart disorders. Offers support and understanding in everyday care and welfare to parents and families of children with heart disorders.

 Heartbeat Northern Ireland

A parent support group for families of children who have heart disease.

 The Congenital Heart Disease Website

This site gives the parents and carers of children with congenital heart disease information to help them make important decisions about their child's treatment. Among the information it provides are profiles of every congenital heart disease centre in the UK, including the number and range of procedures they carry out and survival rates for the most common types of treatment. The site has been developed by The Information Centre for health and social care, in collaboration with the Society for Cardiothoracic Surgery and The British Congenital Cardiac Association (BCCA). .

 Grown Up Congenital Heart Patients Association (GUCH)

GUCH Provides support and advice to adults and teenagers born with Congenital Heart Defects.

 British Cardiac Patients Association

Offering support, reassurance and information to all cardiac patients. Representing patients in local and national issues relating to coronary heart disease.

 British Heart Foundation

A charitable organisation that aims to play a leading role in the fight against heart disease. Provides information on many types of heart conditions including congenital heart defects.

 Down's Heart Group

A UK charity providing support and information to families who have a member with Down's Syndrome and associated congenital heart problems. They also have some overseas members.

 Heartline Association

A UK voluntary organisation set up to offer help and support to children with heart disorders and their families.

 hearts4teens

Website run by a group of young people who are growing up with a heart problem. they either go to high school or sixth form. They also meet together at Booth Hall Children's Hospital about six times a year.

 Evelina Children's Heart Organisation (ECHO)

Set up to offer support to families of children with heart conditions who are treated at the Evelina Childrens's hospital within Guy's and St Thomas' Hospital trust

 Barth Syndrome Trust

Aims to increase awareness amongst health professionals and the general public both to facilitate accurate diagnosis and to provide continuing support to affected families after diagnosis.

 Ebstein's Anomaly

Provides a valuable focal point for information and recent research into this congenital heart condition as well as providing a forum for all
those affected.

 Little Hearts Matter

Offers support and information, and raises awareness of those affected when a child has only half a heart, due to conditions such as Hypoplastic Left Heart Syndrome, Pulmonary Atresia, Tricuspid Atresia or Double Inlet Ventricle.

 Endovascular closure of atrial septal defect

A patient guide to complement the NICE national guideline for health professionals called Endovascular closure of atrial septal defect.

 Endovascular closure of patent ductus arteriosus

A patient guide to complement the NICE national guideline for health professionals called Endovascular closure of patent ductus arteriosus.

 Balloon angioplasty of pulmonary vein stenosis in infants

A patient guide to complement the NICE national guideline for health professionals called Balloon angioplasty of pulmonary vein stenosis in infants.

 Balloon angioplasty with or without stenting for coarctation or recoarctation of aorta in adults and children

A patient guide to complement the NICE national guideline for health professionals called Balloon angioplasty with or without stenting for coarctation or recoarctation of aorta in adults and children.

 Balloon dilatation of systemic to pulmonary arterial shunts in children

A patient guide to complement the NICE national guideline for health professionals called Balloon dilatation of systemic to pulmonary arterial shunts in children.

 Balloon dilatation with or without stenting for pulmonary artery or non-valvar right ventricular outflow tract obstruction in children

A patient guide to complement the NICE national guideline for health professionals called Balloon dilatation with or without stenting for pulmonary artery or non-valvar right ventricular outflow tract obstruction in children.

 Balloon valvuloplasty for aortic valve stenosis in adults and children

A patient guide to complement the NICE national guideline for health professionals called Balloon valvuloplasty for aortic valve stenosis in adults and children.

 Balloon dilatation of pulmonary valve stenosis

A patient guide to complement the NICE national guideline for health professionals called Balloon dilatation of pulmonary valve stenosis.

  Hybrid procedure for interim management of hypoplastic left heart syndrome in neonates

A patient guide to complement the NICE national guideline for health professionals called Hybrid procedure for interim management of hypoplastic left heart syndrome in neonates .

 Medicine Guide for Preventing Closure of Ductus Arteriosus

Medicine Guides provide reliable information about medicines (drugs), conditions and the different treatment options available. They have been developed in the UK as part of the Medicines Information Project.

  Parents of children with congenital heart disease

Healthtalkonline, is an award-winning charity website, which lets you share in other people's experiences of health and illness. The information is based on qualitative research into patient experiences led by experts at the University of Oxford.

 Tiny Tickers

A charity which aims to improve the detection, care and treatment of heart disease in babies, before birth.

 Max Appeal

Provides support and information to families affected by DiGeorge syndrome, Velo-cardio-facial syndrome (VCFS) and 22q11.2 deletion.

 Congenital heart disease

Information from NHS Choices - the government's patient information portal.

Further sources / more detailed information

Some non-UK sites

The following list popular non-UK health information sites with content aimed at the general public. They are mainly from the US. They have not been checked to see if information about the above topic is included but these large sites are comprehensive.

• Non-UK disease / illness sites
• Non-UK self-help / support group sites

More detailed medical information

The following list online sources of more detailed medical information, mainly from the UK. These sites are mainly aimed at health professionals, but are of interest to all. They have not been checked to see if information about the above topic is included, but information about most medical topics can usually be found.

• PatientPlus - hundreds of medical reference articles provided by Patient UK.
• Evidence Based Medicine - such as from Clinical Evidence, The Cochrane Library, etc.
• Database of UK Clinical Guidelines - from NICE, SIGN, Clinical Knowledge Summaries, etc.
• Medline - abstracts available from thousands of journals.
• Sites listing free online medical textbooks and journals.
• Sites listing free medical images - pictures, atlases, anatomy, skin diseases, etc.