Sign inCongenital Heart Disease
UK sources of information and / or support
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.
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 explaining the most common heart conditions and relevant treatments.
Heartline Association
A UK voluntary organisation set up to offer help and support to children with heart disorders and their families.
Heartbeat NI
A parent support group in Northern Ireland for families of children who have heart disease.
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.
The Congenital Heart Disease Website
This site, developed by the Information Centre for Health and Social Care in collaboration with the Society for Cardiothoracic Surgery and the British Congenital Cardiac Association, 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.
Endovascular closure of atrial septal defect
A patient guide to complement the NICE guideline of the same name for health professional.
Transcatheter Endovascular Closure of Perimembranous Ventricular Septal Defect
A patient guide to complement the NICE guideline of the same name for health professionals.
Endovascular closure of patent ductus arteriosus
A patient guide to complement the NICE guideline of the same name for health professionals.
Balloon angioplasty of pulmonary vein stenosis in infants
A patient guide to complement the NICE guideline of the same name for health professionals.
Balloon angioplasty with or without stenting for coarctation or recoarctation of aorta in adults and children
A patient guide to complement the NICE guideline of the same name for health professionals.
Balloon dilatation of systemic to pulmonary arterial shunts in children
A patient guide to complement the NICE guideline of the same name for health professionals.
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 guideline of the same name for health professionals.
Balloon valvuloplasty for aortic valve stenosis in adults and children
A patient guide to complement the NICE guideline of the same name for health professionals.
Balloon dilatation of pulmonary valve stenosis
A patient guide to complement the NICE guideline of the same name for health professionals.
Hybrid procedure for interim management of hypoplastic left heart syndrome in neonates
A patient guide to complement the NICE guideline of the same name for health professionals.
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.
British Cardiac Patients Association
Offers support, reassurance and information to all cardiac patients and represents patients in local and national issues relating to coronary heart disease.
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.
Grown Up Congenital Heart Patients Association (GUCH)
Provides support and advice to adults and teenagers born with Congenital Heart Defects.
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.
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.
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.
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.
Max Appeal
Provides support and information to families affected by DiGeorge syndrome, Velo-cardio-facial syndrome (VCFS) and 22q11.2 deletion.
Tiny Tickers
A charity which aims to improve the detection, care and treatment of heart disease in babies, before birth.
Ductus arteriosus (closing of)
Information from emc Medicine Guides.
Ductus arteriosus (preventing closure of)
Information from emc Medicine Guides.
Parents of children with congenital heart disease
Patient experience video from Healthtalkonline.
Congenital heart disease
Information from the British Heart Foundation.
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, 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.