Other Organisations

• Contact List for Heart Families – A list of contacts that may be useful for families caring for heart children.

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.
• CHD Website: Understanding Children’s Heart Surgery Outcomes  A website that sets out to give parents and carers of children with congenital heart disease the tools to understand published survival data about children’s heart surgery in the UK and Ireland.
• CONTACT – 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.
• 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.
• South Wales and South West Congenital Heart Disease Network provides resources about congenital heart disease pathways for babies and children; teenagers and young adults; and adults with CHD.
• Sweetpea Charity  supports children living with disabilities through the provision of specialised equipment.
• 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.

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