ECHO works alongside and in partnership with many local and national heart support groups and charities, ensuring we are aware of the national issues and best practices that may affect members of the CHD community. We also work alongside our partners to deliver some of our services, and are united in our advocacy work, most recently successfully campaigning for changes to the guidance supplied to assessors of Disability Living Allowance.
Arrythmia Alliance (A-A) is a coalition of charities, patient groups, patients, carers, medical groups and allied professionals. Although these groups remain independent, they work together under the A-A umbrella to promote timely and effective diagnosis and treatment of arrhythmias.
British Heart Foundation is a national charity dedicated to funding research into cardiovascular disease, campaigning and providing information and resources about heart disease.
CRY supports young people diagnosed with potentially life-threatening cardiac conditions and offers bereavement support to families affected. The charity also promotes and develops heart-screening programmes, funds medical research, publishes and distributes medical information, and funds specialist referral, screening and cardiac pathology services at leading UK hospitals.
The Children’s Heart Federation is a parent-led charity working with partner groups to make life better for children and young people, with acquired or congenital heart disease.
Down’s Heart Group in a national charity that provides support and information specifically relating to individuals who have heart problems and Down’s Syndrome.
Heartline Families supports children with heart disorders and their families, whatever the condition, wherever it is treated.
Lamont Jones provides small and medium businesses with HR, Training, Recruitment and Health and Safety advice and guidance.
Little Hearts Matter is a national charity offering help to anyone affected by the diagnosis of single ventricle heart condition. From initial antenatal diagnosis, through treatments and into life at home, the charity works with children, young adults and families to reduce the isolation, fear and lack of understanding created when a child is diagnosed as having half a working heart.
Supporting families affected by DiGeorge syndrome and VCFS.
Rainbow Trust cares supports families who have a child with a life threatening or terminal illness. ECHO partners with Rainbow Trust to deliver our cardiac family support service, which aims to bridge the gap between the medical care that families receive in hospital and the social palliative care they receive in the home or community. Our Cardiac Support Worker works closely with both Rainbow Trust and ECHO to ensure that families whose children have life threatening and complex heart conditions receive the additional emotional and practical support they need.
Ronald McDonald House Evelina provides free accommodation to families whose child is staying at Evelina London Children’s Hospital. The house is equipped with bedrooms, bathrooms, a kitchen and communal areas. ECHO sponsors a bedroom at Ronald McDonald House Evelina every year.
The Somerville Foundation is a national organisation working with young and adult patients born with a heart condition (congenital), providing practical and emotional support, and enabling them to take control of their lives and manage their own heart condition.