Specialist support for Congenital Heart Defects
Here are some other incredible charities that support families who have children with Congenital Heart Defects .
Specialist Support for Congenital Heart Defects
Specialist support thats not attatched to specific cardiac hospitals
Children's Heart Fed
Provide information to families of children with acquired /congenital heart disease, plus much more including links to other heart groups .
Little Hearts Matter
For children with heart conditions and their families, online forums where you can chat to other parents and share experiences ,plus much more .
Heartline Families
Offers support and information to families affected when a child has only half a heart ie HLHS, complex pulmonary artresia etc
British Heart Foundation
Great publications on certain congenital heart disease's, Cardiac Liason Nurses plus much more .
Cardiomyopathy Assoc
The Cardiomyopathy Association helps sufferers and their families best mange the impact of cardiomyopathy
Amelia Matters
Amelia Matters is an organisation that helps to support children who suffer from Congenital Heart Disease (CHD). By educating and raising awareness we hope to help children living with a CHD and their families.
Tiny Tickers
Helping to improve the detection, diagnosis and care of heart babies at birth and soon after.
Charities within Cardiac Centres or attached to units
The Brompton Fountain
The Brompton Fountain Supporting children's cardiac, respiratory and intensive care at Royal Brompton Hospital
Echo
Support for children with heart conditions from birth to adulthood who have been treated by Evelina London, Royal Brompton and Harefield and their networks of specialist local hospitals
Children's Heart Unit Fund
Support For children and families treated at the Freeman hospital Newcastle.
Children's Heart Surgery Fund
Keep The Beat
Supports families treated at East Midlands Congenital Centre ,Leicester.
Heart Link
Supports families treated at East Midlands congenital centre ,Leicester Royal Infirmary.
Genetic condition support groups / Charities
Various charities and organisations supporting families whose children have genetic conditions
Max Appeal
We are a charity that supports families with 22q11,2 deletion / Digeorge syndrome .
Unique
Understanding Rare Chromosone and Gene Disorders . Supporting families providing information and networking.
Down's Syndrome Association
We are a national organisation, committed to improving quality of life for people who have Down’s syndrome, promoting their right to be included on a full and equal basis with others.
Home - Downs Syndrome Association (downs-syndrome.org.uk)
Barth Syndrome Uk
Our Mission: Saving lives through education, advances in treatment and finding a cure and Supporting families on this journey.
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