Organisations in the UK
Children's Heart Federation
http://www.childrens-heart-fed.org.uk
The Children's Heart Federation (CHF) brings together groups across Britain and Ireland so that they can share problems, ideas, approaches and educational materials designed to help heart children.
Hearts4Teens
http://www.hearts4teens.org.uk
The Hearts4Teens website has been developed by the Manchester Cardiac Youth Forum. It is aimed at answering all those questions that young people who are growing up with heart problems have.
Scottish Association for Children with Heart Disorders
http://www.youngheart.info
The SACHD is one of several groups which fall under the umbrella of the Children's Heart Federation. All of the money they raise in Scotland is spent on research projects, equipment for hospitals and homes and family support grants. They publish information leaflets, books magazines and newsletters as well as providing weekend breaks for young adult and teenage groups.
British Heart Foundation
http://www.bhf.org.uk
The aim of the British Heart Foundation is to play a leading role in the fight against heart disease so that it is no longer a major cause of disability and premature death.
Cardiomyopathy Association
http://www.cardiomyopathy.org
This site is designed to provide information on the main forms of the heart muscle disease known as Cardiomyopathy.
Contact a family
http://www.cafamily.org.uk
Contact a Family (CaF) is the only UK charity providing support and advice to parents whatever the medical condition of their child.
Downs Heart group
http://www.dhg.org.uk
The Down's Heart Group is a UK charity which offers support and information relating to heart conditions associated with Down's Syndrome. They also can provide specialised help to parents and professionals.
H.E.A.R.T. UK
http://www.heartuk.org.uk
The Family Heart Association merged with the British Hyperlipidaemia Association in June 2002 to form H.E.A.R.T UK. We aim to make all aware that high levels of cholesterol are a serious heart disease risk. We are committed to tracing over 100,000 people in the UK who have inherited high cholesterol. We endeavour to support and advise anyone who wishes to reduce the risks of heart disease.
Grown Up Congenital Heart Patients Association
http://www.guch.org.uk
The Grown Up Congenital Heart Patients Association (GUCH) is a UK charity, founded in 1993 to provide information and support for young people and adults who were born with a heart condition, and their families. The Association is supported by the British Heart Foundation.
Heartline
http://www.heartline.org.uk
We provide information on congenital heart defects, in the form of fact sheets about children in hospital, their rights, medicines, pain, preparation for surgery, different disorders, education, exercise, feeding problems, etc.
Little Hearts Matter
http://www.lhm.org.uk
Little Hearts Matter is the national voice for families where a single ventricle heart condition, such as Hypoplastic Left Heart Syndrome, Tricuspid Atresia, Double Inlet Ventricle or Pulmonary Atresia has been diagnosed. The charity works with medical and social care teams to offer a multi-disciplinary approach to the support and information needed by this group of people and their carers.
Wessex Children's Heart Circle
http://www.wchc.org.uk
The Wessex Children's Heart Circle aims to support children with heart disorders and their families whilst they undergo the traumas of discovery of a heart problem and subsequent surgery or other treatment, on-going permanent problems, or, sadly, sometimes bereavement.
Echo - Evelina Children's Heart Organisation
http://www.echo-at-guys.org.uk
ECHO is an entirely voluntary organisation, run by parents for the families of children born with heart conditions who are treated at Guy's Hospital in London.
BDF Newlife
http://www.bdfcharity.co.uk
We do real work with real families. We fund real research on real inborn conditions. Why? - Because some babies are very, very special and being different is what makes the difference. We are the UK's leading child health and research charity, helping babies and families with inborn conditions.
Charitynet
http://www.charitynet.org
An online resource which brings together the websites of non-profit organisations and their service providers across the world.
Family Fund
http://www.familyfund.org.uk
The Family Fund helps families of disabled and seriously ill children under the age of 16. We give grants and information related to the care of the child. The range of grants includes holidays, leisure, laundry equipment, driving lessons and lots more. The range of information includes information sheets on subjects such as benefits, holidays and transport, and books such as Taking Care, After 16 - what's new? and more.
The Ashley Jolly Sad Trust
http://www.sadsuk.org
The Ashley Jolly Sad Trust (SADS UK) is a voluntary organisation that exists to raise awareness about little known heart conditions in young people and provides information and support to families who have experienced the sudden unexpected death of a loved one due to such a condition. The Trust fundraises to purchase and donate heart monitoring equipment to detect potentially fatal heart conditions in order that once a condition is identified the patient can be referred to a cardiologist for treatment, to minimise the risk of sudden premature death.
Children's Heart Unit Fund
http://www.chuf.org.uk
CHUF is a voluntary charity who's aim is to help support the Children's Heart Unit at the Freeman Hospital In Newcastle. They help by funding equipment, personnel, research, or anything else that may be needed to help keep the unit at the forefront of children's coronary care.
Heart Transplant Families Together
http://www.htft.org.uk
HTFT are a group of people who have as, parents, relatives, carers and medical staff, experienced the close association with children who have been diagnosed as having some form of heart or heart/lung illness and in many cases have undergone heart or heart/lung transplantation.
Special-Abilities.net
http://www.special-abilities.net
Special Abilities aims to help and support parents and carers of a child with a special need. They have been able to offer support, advice, information booklets and a web site and have been able to help hundreds of parents/carers of a child with a special need through one to one contact, emails, events, and thousands of parents/carers through the web site.
Barth Syndrome Trust
http://www.barthsyndrome.org.uk
Barth syndrome is a rare and serious genetic disorder. One of the ways it can manifest is as Cardiomyopathy. The Barth Syndrome Trust was created to better serve the needs of affected families both in the UK and the rest of Europe.
Transplant Kids
http://www.transplantkids.co.uk
This site has been created and is maintained by a transplant family. The information is meant to be in words that a child may understand and not guaranteed to be entirely correct in all cases. Every transplant centre has it's own protocols and every child is unique so there will always be variations in care and treatment.
Max Appeal
http://www.maxappeal.org.uk
Supporting families affected by DiGeorge syndrome, VCFS and 22q11.2 deletion. Max Appeal is run by parents for parents. Our events are designed to make life enjoyable and our information aims to inform and help.
L.O.A.D.S.
http://www.loads.org.uk
Local Opportunities & Awareness of Downs Syndrome.
They are a separate group from the Down's syndrome Association, but hope to work with them if needs be. They provide a support network for families of people with Down's syndrome, aiming to put families in touch with each other for support. They provide a forum through which you can get in touch with other parents.
If any of the above links are out of date, or you know of any other sites which are relevant and could be included, please send an email to information@heartchild.info.
