Support Groups
Patient Transport Service (PTS NWAS)https://www.nwas.nhs.uk/services/patient-transport-service-pts/ Patient Transport Service (PTS) is a non-emergency service for people who may need special support getting to and from their healthcare appointments. We provide the service for patients in Cumbria, Lancashire, Greater Manchester and Merseyside. | North West Ambulance Service 0345 112 0999 | |
Transport for Sick Childrenhttps://transportforsickchildren.org/ Transport for Sick Children is charity with an incredible team of volunteers who give up their time and use their own cars to take accompanied children to hospital and clinic appointments. | Transport For Sick Children 0161 443 4122 | |
Well ChildWellChild is the national UK children's charity making it possible for children and young people with exceptional health needs to be cared for at home instead of hospital, wherever possible. | Office 23, Sunningend Business Centre 01242 530007 | |
Rainbow Trust Children's Charityhttps://www.rainbowtrust.org.uk/ Rainbow Trust Children’s Charity supports families who have a child aged 0-18 years with a life-threatening or terminal illness. | Rainbow Trust Children's Charity, 01372 363438 | |
Children's Heart AssociationThe Children’s Heart Association is our local heart charity supporting families, children and adults with congenital heart disease in the North West. They provide opportunities throughout the year to meet up with other families and offer peer to peer support. They support the work of both our paediatric and adult services. | 23 Hesketh Drive, 01706 221988 | |
Tiny Tickershttps://www.tinytickers.org/contact-us/ A national charity helping improve the detection, care and treatment of babies with serious heart conditions and offering information and support to parents. | Write to us at: 0300 102 1508 | |
Scope Community EngagementScope's Community Engagement project gives disable people, their families and unpaid carers the opportunity to talk about their communities and the issues they face. Click here for further information | Jo Palmer 07776 650893 | |
North West Adult Congenital Heart (NWACH Support Group)https://www.facebook.com/groups/MACHnetwork?form=MY01SV&OCID=MY01SV The North West Adult Congenital Heart Support Group has a private Facebook group that is run by the ACHD specialist nurses. It is a safe place to meet other adults with congenital heart disease to share stories and offer each other support. Regular updates are provided by the specialist ACHD team via remote meetings and Facebook live events. | Join our Facebook Group - see link under our heading. | |
Team 1CTeam 1C are a big cardiac family providing peer to peer support for families going through the same heart journey with their children. | Halton & St Helens VCA | |
Transport Services - Royal Voluntary ServicesCommunity transport help for to and from hospital appointments etc | Contact form available at the bottom of the web link page | |
Lagans FoundationAims to physically help support families who have babies and children up to 5 years old, diagnosed with heart defects OR feeding difficulties. Lagan’s Foundation’s purpose is to provide unique at home and in hospital care to support parents in their caring role. | Lagan’s Foundation 01204 800300 | |
The Somerville FoundationSupporting young people and adults born with a heart condition | The Somerville Foundation, Saracens House, 25 St Margaret's Green, Ipswich, IP4 2BN 0800 854759 | |
Turn2usTurn to us is a national charity that helps people in financial hardship gain access to welfare benefits, charitable grants and support services. | 0808 802 2000 | |
Marfan TrustImprove the treatment of patients and increase awareness of Marfan’s disease. | Charity Administrator, Marfan Trust, Genetics Research Centre, Molecular and Clinical Sciences Research Institute, St. George’s, University of London, Jenner Wing, Cranmer Terrace, London SW17 0RE 020 8725 5248 | |
HeartlineHeartline supports children with heart disorders and their families, whatever the condition, wherever it is treated. | 033 0022 4466 | |
Cardiomyopathy UKhttps://www.cardiomyopathy.org/ Specialist national charity for people affected by cardiomyopathy. We provide support and information services, work to raise awareness of the condition, campaign for better access to quality treatment and promote research. | Unit 10, Chiltern Court, 0800 018 1024 | |
Cardiac Risk in the YoungPreventing young sudden cardiac deaths through awareness, screening and research, and supporting affected families. | Unit 1140B The Axis Centre, 01737 363222 | |
British Heart FoundationWe are the largest independent funder of research into heart and circulatory diseases, keeping hearts beating and blood flowing. | Greater London House, 0300 330 3311 | |
STARShttp://www.heartrhythmalliance.org/stars/uk Working together with individuals, families and medical professionals to offer support and information on syncope and reflex anoxic seizures (RAS) | STARS, Unit 6B, Essex House, 01789 867 503 | |
AF Associationhttp://www.heartrhythmalliance.org/afa/uk/ Working to provide information, support and access to established, new or innovative treatments for Atrial Fibrillation (AF) | AF Association, Unit 6B, 01789 867 502 | |
Arrhythmia Alliancehttp://www.heartrhythmalliance.org/aa/uk/ Working together to improve the diagnosis, treatment and quality of life for all those affected by arrhythmias | Arrhythmia Alliance Unit 6B, +44 (0)1789 867 501 | |
Downs Heart GroupA charity offering support and information relating to heart conditions associated with Down's Syndrome | Down's Heart Group, 0300 102 1644 | |
Max AppealSupporting families affected by 22q11 Deletion Syndrome and 22q11 duplication. | 13 Meriden Avenue, 0300 999 2211 | |
Little Hearts MatterOffers support and information for families with children/babies with single ventricle heart conditions | 11 Greenfield Crescent, 0121 455 8982 | |
Children’s Heart FederationNational children’s heart charity working to meet the needs of children and young people with congenital and acquired heart conditions and their families | Childrens Heart Federation, Suite 12, The Centre, Lakes Industrial Park, Braintree, CM7 3RU 0300 561 0065 | |
ContactThe UK charity for families with disabled children. Contact provides information and guidance, brings families together to support each other, and helps families campaign for change | 209-211, 020 7608 8700 | |
Antenatal Results and ChoicesInformation and support to parents throughout antenatal testing, diagnosis and choices | 345 City Road, 020 7713 7356 |