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.
Applecross Homes is a boutique developer specialising in small schemes of luxuriously-appointed new homes across Kent and East Sussex.
At Applecross we are driven by the belief in creating high-quality spaces that enrich the lives of those that occupy them. Places where design is influenced as much by the requirements for practical living as it is by architectural inspiration and where specifications combine the needs of today with the technology of tomorrow. Places where family gathering is as important as personal space.
The Armed Forces Programme supports patients who have links to the armed forces, whether you’re a serving member of the forces, reservist, veteran or immediate family member of someone who has served or is serving. They can provide practical support, help with getting the right healthcare, welfare and wellbeing guidance and links, career development opportunities, links to other veterans’ networks and information about upcoming events. Read more about this here.
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.
GSTT – Evelina London CHD Network is a partnership of Congenital Heart Disease centres across East and South East England, comprising of 24 centres across 17 NHS Trusts working together to deliver our network vision. ECHO supports the network to promote patient and public engagement, and advocate for our members’ care across the network.
Heartline Families supports children with heart disorders and their families, whatever the condition, wherever it is treated.
Since 2018, ECHO has collaborated on projects led by Dr Pablo Lamata and his group from the department of Biomedical Engineering at King’s College London (developing new technologies to treat heart conditions) exploring the future of medical imaging – such as computer simulations to help surgeons plan surgery (together with Celulle Studio). Read more about this here.
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.
ECHO has worked with PhD student Elizabeth Bichare at London South Bank University to promote research focusing on siblings of children with CHD, including inviting ECHO members to join an advisory board and siblings to take part in surveys and interviews. We hope that this vital research encourages further support for siblings of children with CHD.
Read more about this here.
Supporting families affected by DiGeorge syndrome and VCFS.
The National Council for Child Health and Well-being (NCCHW) brings together more than 50 professional groups focused on improving the health and welfare of children and young people across the U.K.
Rainbow Trust cares supports families who have a child with a life threatening or terminal illness. In 2015 ECHO partnered with Rainbow Trust to deliver a dedicated cardiac family support service, seeking 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. ECHO sees the importance in providing seed funding for services it recognises as providing intrinsic value, allowing care services such as the cardiac family support service to grow and eventually run independently, as this role has done since 2019. You can ask for support here.
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.