RESOURCES AND INFO
 

Links to Other Organisations

Member Groups

Paediatric Cardiac Units

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.
  • BDF Newlife - Provide information and support and nurse advice for all birth defects. 
  • 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.
  • 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.   
    DfES (Department for Education and Skills) - A website that promotes the welfare and interests of disabled children, and to lobbies to improve the support they receive.
  • Directgov - A government site bringing together the widest range of public service information and services online.
  • Disability Rights Commission - The Disability Rights Commission (DRC) is an independent body established in April 2000 by Act of Parliament to stop discrimination and promote equality of opportunity for disabled people.
  • 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. 
  • GO-CHD Study - This is a research group in Oxford led by Professor Shoumo Bhattacharya who are trying to find out the causes of congenital heart conditions.  
  • 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.
  • NHS Evidence - Child Health - Use the search facility to find articles relating to congenital heart conditions.
    One parent families - Provides advice and support for single parents caring for a child with disabilities or long term health problem.
  • Tiny Tickers - An organisation oncerned 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