See below a list of local and National charities supporting children with heart problems and adults with congenital heart disease. This list also includes charities that offer general support, information and advice when living with a chronic illness.
If you are aware of any other charities or support groups that might be helpful for patients and families to be aware of please let us know by emailing this information to northwestchdnetwork@alderhey.nhs.uk
Click on each individual box to be taken to the website. The “more info” button will provide contact details of the organisation.
Children's Heart Association
Children's Heart Association
Tiny Tickers
ARC
Little Hearts Matter
Children's Heart Federation
Congenital Heart Disease Guidance for parents
Spoons Neonatal Family Support
The Somerville Heart Foundation
Somerville Heart Foundation
National patient support group for adults with congenital heart disease.
Website: www.thesf.org.uk
Helpline: 0800 854 759
Email: admin@thesf.org.uk
British Heart Foundation
British Heart Foundation
National Support Group run by the British Heart Foundation for young people growing up with congenital heart disease.
NWACH
NWACH
This is a support group for adults who have grown up with their heart problem and are being cared for in the North West of England, North Wales or the Isle of Man.
Join via FaceBook: N-WACH Support Group | Facebook
Telephone the ACHD Helpline: 0151 254 3333 to find out more.
BEAT Eating Disorders
Beat Eating Disorders
Learn more about eating disorders.
Website: https://www.beateatingdisorders.org.uk/
NHS Live Well
NHS Live Well
NHS advice about healthy living, including eating a balanced diet, healthy weight, exercise, quitting smoking and drinking less alcohol.
Website: https://www.nhs.uk/live-well/
FRANK
Frank
Provides a friendly, confidential and non-judgmental service to anyone wanting help, information or advice about drugs through a helpline, website, email or text messaging service.
Website: https://www.talktofrank.com/
Drinkaware
Drinkaware
Drinkaware can help you learn about the impact of alcohol on you, your friends or your family. They offer support, information and advice.
Website: https://drinkaware.co.uk
MIND
Mind
Providing advice and support to anyone experiencing a mental health problem.
Website: https://www.mind.org.uk/
NHS Sexual Health Services
Sexual Health Services
Sexual health services are free and available to everyone, regardless of sex, age, ethnic origin and sexual orientation.
Website: https://www.nhs.uk/nhs-services/sexual-health-services/guide-to-sexual-health-services/
YoungMinds
Young Minds
Whether you want to understand more about how you’re feeling and find ways to feel better, or you want to support someone who’s struggling, Young Minds can help
Website: YoungMinds | Mental Health Charity For Children And Young People | YoungMinds
Patient Transport Service (PTS NWAS)
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
Ladybridge Hall HQ
Chorley New Road
Bolton
BL1 5DD
0345 112 0999
Transport for Sick Children
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
Suite 338 Stockport Business & Innovation Centre Broadstone Mill Broadstone Road Stockport SK5 7DL
0161 443 4122
Well Child
WellChild 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
22 Lansdown Industrial Estate
Cheltenham
Gloucestershire
GL51 8PL
01242 530007
Rainbow Trust Children's Charity
RAINBOW TRUST CHILDREN'S CHARITY
Rainbow Trust Children’s Charity supports families who have a child aged 0-18 years with a life-threatening or terminal illness.
Website:
Supporting Children and Families | Rainbow Trust Children's Charity
Scope Community Engagement
SCOPE
Scope'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
Website: Home | Disability charity Scope UK
Transport Services - Royal Voluntary Services
ROYAL VOLUNTARY SERVICE
Community transport help for to and from hospital appointments etc
Website: Click here
Lagan's Foundation
LAGAN'S FOUNDATION
Aims 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.
Contact:
01204 800300
Email:
info@lagans.org.uk
Turn2us
TURN2US
Turn to us is a national charity that helps people in financial hardship gain access to welfare benefits, charitable grants and support services.
Contact:
0808 164 8817
Marfan Trust
MARFAN TRUST
Improve the treatment of patients and increase awareness of Marfan’s disease.
Contact:
0333 011 5256
Email:
info@marfantrust.org
Heartline
HEARTLINE FAMILIES
Heartline supports children with heart disorders and their families, whatever the condition, wherever it is treated.
Contact:
07949 256302
Email: intouch@heartline.org.uk
STARS
STARS
Working together with individuals, families and medical professionals to offer support and information on syncope and reflex anoxic seizures (RAS)
Contact:
01789 867503
Email:
info@stars.org.uk
AF Association
AF ASSOCIATION
Working to provide information, support and access to established, new or innovative treatments for Atrial Fibrillation (AF).
Contact:
01789 867502
Email:
info@afa.org.uk
Arrhythmia Alliance
ARRHYTHMIA ALLIANCE
Working together to improve the diagnosis, treatment and quality of life for all those affected by arrhythmias.
Contact:
01789 967 501
Email:
info@heartrhythmalliance.org
Contact
Contact
The 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.
Helpline:
0808 808 3555
Mon-Fri 9.30am-5.00pm
Molly Ollys
Molly Ollys
Molly Ollys supports children with life-threatening illnesses and their families to help with their emotional wellbeing. We provide gifts to individuals and donate therapeutic toys and books to both children directly and to hospitals throughout the UK.
We are professional and personal and never forget that those we help are going through extremely challenging times. We always strive to be empathetic and compassionate.
Contact:
01926 698735
07747 854914
Email:
Cardiomyopathy UK
Receiving a diagnosis of cardiomyopathy can be life changing.
From understanding your condition to advice on treatment plans, we have information you can trust to support you every step of the way.
Contact:
Helpline: 0800 018 1024
Email: contact@cardiomyopathy.org
Support Group:
Heart Heroes
Contact
To promote positive medical experiences, encourage patient participation, and provide
positive reinforcement for procedures through a tangible record of their healthcare journey.
Hub locations:
Pyjama Fairies
Pyjama Fairies is the only UK charity to make pyjamas and surgical gowns specially designed for babies and children. We are one of the few volunteer charities solely dedicated to helping children feel more comfortable while in hospital. While other great organisations focus on research and finding a cure, we work to improve the quality of life of children and their families as they undergo surgical procedures and treatment.
