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.
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 (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.
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.
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.
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.
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.
This is a French language website which is intended to encourage and extend the relationship between patient and doctor. The site also has an extensive directory of other organisations and provides a translation facility.
Contains a great deal of information on the heart, diseases and conditions, lifestyle and more. Their mission is to build healthier lives, free of cardiovascular diseases and stroke. That single purpose drives all we do. The need for our work is beyond question.
The Heart Foundation is a community-based organisation established to reduce the incidence of heart disease and stroke in the population of South Africa by providing education and supporting research.