Support Groups & Charities
There are a lot of support groups for families supporting various medical conditions. Below is a selection of support groups we think you may find useful. If you think of any more we can add then please let us know.
The Children’s Heart Federation is the leading children’s heart charity and the umbrella body for voluntary organisations working to meet the needs of children and young people with heart conditions and their families. Helpline, website and newsletter
|Help Line 0808 808 5000|
Advice and information about living with a heart condition and how to keep healthy. Helpline and website
|020 7554 0000|
Young Hearts is run by volunteers and was set up by local parents of heart children to offer a listening ear by being at the end of a phone and to make a difference in the life of a heart child and their family. We provide advice, support and information, as well as fundraising to purchase equipment for the ward or cardiac team and arrange social events for the children and their families.
|0845 467 3052|
A group that offers support to each other with the day-to-day challenges of having a child with a heart condition based in and around the Exeter area. Children are treated at a range of cardiac units including Southampton, Bristol and Royal Brompton and all families irrespective of treatment centre are welcome to join.
National group with local contacts providing support and information for families. Newsletter and website:
Down’s Heart Group
PO Box 4260
National group for adult and teenagers, providing families with support and information. Newsletter, website and social events.
|Help Line 0800 854 759|
Heartline supports children with heart disorders and their families, whatever the condition, wherever it is treated.
|join us: www.heartline.org.uk|
National support group for families with children with single ventricle conditions. Newsletter, information booklet and website.
|Help Line 0121 455 8982|
Support group for families with children affected by Di George Syndrome and 22q deletion. Information leaflets, website and newsletter.
|0800 389 1049|
Advice and information for young people with heart conditions. website
The Rainbow Trust Children’s Charities provides practical and emotional support to families with life threatening or terminal illness:
Over The Wall is a national children’s charity. Our purpose is to provide life-changing experiences to children and young people aged 8-17 who are affected by serious and life limiting illnesses. We do this by offering free activity camps specifically developed to foster coping, resilience, self-esteem and confidence.
Established in 1992, Wessex Heartbeat is one of the region’s major charities and exists to support the work of the Wessex Cardiac Centre (WCC), one of the UK’s leading heart treatment centres.
Children’s Heart Support Network (formerly Wessex Childrens Heart Circle) is a support group for the families of children with heart disorders. Its members can all relate to one another regarding the emotions, experiences and fears that occur when their child is diagnosed with a heart condition and when a hospital visit or surgery is required. We can also support during times of hospitalisation with financial hardship grants for those that meet the need and criteria, as funds allow.
Written information, advice and support for children & adults with Cardiomyopathy.
Antenatal national group providing information and support for parents and education for professionals.
As part of the enable ability initiative Pals provides opportunities for social interaction for physically disabled children above the age of 6.
One Stop Wiltshire provides short break opportunities for children and young people with disabilities to spend time away from their primary carers, and can include day, evening, overnight, weekend or holiday activities in and around Wiltshire. One Stop Wiltshire offer a variety of activities such as dancing, drum club, wheelchair basketball and many more. If you live near one of Wiltshire’s borders you can also try the “Out-of-county” details via the Useful Info section.
The UK’s first and only National Charity to provide support and at home care to families with babies and children under the age of 5 diagnosed with Congenital Heart Defects and / or feeding difficulties.
Associated with these cardiac conditions are feeding difficulties. The feeding difficulty can become the centre of attention for any baby or child and can cause failure to thrive. We know first hand how parents feel the strain of having a baby or child that cannot feed and from this we would like to offer other parents support in the form of respite care at home and at hand information.
One in 20 children are born with a disability in the UK. Contact a Family is the only national charity that exists to support the families of disabled children whatever their condition or disability.