Other Organisations

General

• British Cardiac Society - BCS aims to support and represent all those working in the fields of cardiovascular care and research.

• British Heart Foundation - BHF strive to play a leading role in the fight against disease of the heart and circulation.

• Carers Direct -  A national information, advice and support service for carers in England. Available online and as a free, confidential helpline seven days a week on 0808 802 0202, it provides accurate, relevant information for carers and those who support them.

• ChildcareLink -  A government service that provides information and advice on childcare.

• Children First For Health - Online guide to health and hospital life for young people, children and families with advice from Great Ormond Street Hospital.

• Corience - Accessible, easy to understand, interactive and full of information, Corience addresses patients, parents,doctors and scientists alike.Corience is a website dedicated to congenital heart defects (CoHD). Patients and relatives can access Corience for in-depth information and useful tips on how to make life with CoHD easier.

• Congenital Heart Disease Website - A website that sets out to give the parents and carers of children with congenital heart disease information to help them make important decisions about treatment.

• Contact a Family - Detailed information and advice for families with disabled children.

• Directgov - A government site bringing together the widest range of public service information and services online.

• Ebstein’s Anomaly - A website providing information, research and parental support on the heart condition Ebsteins Anomaly.

• Every Disabled Child Matters (EDCM) - EDCM is a campaign for disabled children and their families to have the right to the services and support they need to live ordinary lives.

• Gransnet - The new social networking site from Mumsnet for the UK’s 14 million grandparents.  Includes an approachable health guide.

• IPSEA (Independent Panel for Special Educational Advice) - National charity that helps to ensure children receive the special educational provision appropriate to their needs and to which they are entitled in law.

• Mumsnet Health Guide - A selection of useful health links from the nation’s preeminant website produced by parents for parents.

• NHS Evidence  - Use the search facility to find articles relating to congenital heart conditions.

• NHS Choices - Find information about Congenital heart disease from NHS Choices, including causes, prevention and treatment.

• Tiny Tickers - An organisation concerned with improving the detection of congenital heart disease before birth, by raising awareness and training healthcare professionals in NHS hospitals in the UK.

International Organisations

• Adult Congenital Heart Association - Supporting adults with congenital heart defects.

• Canadian Adult Congenital Heart Network - The CACH Network was created to pool the knowledge and experience of congenital heart disease professionals in Canada to help strengthen their skills and knowledge of the discipline.

• Canadian Congenital Heart Alliance - A registered charitable organization made up of patients with a congenital heart defect, their friends, families, and the medical community.

• Cincinnati Children’s Hospital – Heart Centre Encyclopedia - The Heart Institute Encyclopedia has been compiled to provide easily accessible information on cardiac diseases, defects, disorders, and problems that may affect a child’s heart.

• Congenital Heart Information Network - provides information, support services, financial assistance and resources to families of children with congenital heart defects and acquired heart disease.