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.