Useful organisations

The following are organisations that offer information and support for people affected by different health and heart conditions.

For more information, please contact the organisations directly. All links below open in a new window.

Find out how we can support you, through our helpline and Live Chat, information, support groups, events, social media and peer support.

UK organisations and charities

Alstrom Syndrome UK
A patient-led organisation for people affected by Alstrom Syndrome. Offers support services and specialist clinics, as well as raising awareness and promoting research.

Arrhythmia Alliance - the heart rhythm charity
An umbrella group of charities, patient groups, patients, carers, medical groups and professionals, which aims to improve the diagnosis, treatment and management of people affected by arrhythmias (heart rhythm problems). Has information on arrhythmias and details of support groups.

British Heart Foundation
A national charity for anyone affected by cardiovascular disease. Provides information, support groups and a national charity.

British Lung Foundation
A national charity for people affected by lung conditions. Offers information, support and a helpline. This site is useful for guidance on oxygen therapy for people with heart conditions.

British Society for Heart Failure
An organisation which aims to increase knowledge and promote research into heart failure, and improving the care of people living with the condition. It provides expert advice to the NHS and healthcare professionals.

Cardiomyopathy UK
We are the only specialist UK charity specifically for people affected by cardiomyopathy. Find out all the ways in which we offer support.

Children's Heart Federation
A charity for anyone affected by Congenital Heart Disease (CHD) - a common birth defect. Provides information and practical help, small grants, and supports research.

CRY - Cardiac risk in the young
A campaigning organisation that aims to preventing young sudden cardiac deaths. Raises awareness and develops research into this condition.

Genetic disorders UK
A UK charity for individuals and families affected by genetic disorders. Provides information and support, including content on their website written by people directly affected buy genetic conditions.

GOV.UK
The website of the UK Government, providing government services and information, including information on health, disability and for carers.

Haemochromatosis Society
National charity for anyone affected by the condition haemochromatosis. Provides information, support, groups and a helpline.

Heart UK - the cholesterol charity
A charity that provides information, support, and guidance on cholesterol. 

Marfan Association UK
Provides support to those with the condition and those supporting them, as well as education and promoting research around Marfan syndrome.

MPS Society
A UK charity for people affected by mucopolysaccharide disease and other lysosomal storage diseases. Provides information and support to families and carers, raises awareness of these conditions, and funds and promotes research.

National Amyloidosis Centre
A patient information site from the National Amyloidosis Centre. Offers 'essential' information and a forum.

NHS Choices
The website for the National Health Service, and the UK biggest general health website. Has information about medical conditions, and their treatment and management. Can also help you to find local services.

Noonan Syndrome Association 
A UK charity that supports individuals and families affected by Noonan Syndrome and other related conditions. Provides information and support, raises awareness of the condition, and funds research.

Pumping Marvellous
A UK charity offering support, advocacy and self-management for people with heart failure.

SADS UK (Sudden Arrhythmic Death Syndrome)
A heart charity that provides information and support around sudden death due to cardiac arrhythmias. They fund research into the area and provide medical equipment, and offer information and contacts for support.

SarcoidosisUK
A UK charity for anyone affected by the medical condition sarcoidosis. Provides information, advice, support groups and a medical helpline.

The Sommerville Foundation
The charity for young people and adults with congenital heart conditions (heart conditions you are born with). Provides help, advice, and practical and emotional support.

Tiny Tickers
A UK charity which aims to help improve the detection, care and treatment of babies with serious heart conditions. Provides support to families affected by the diagnosis of a heart condition, as well as training sonographers to identify heart conditions during routine pregnancy scans. Also raises awareness and supports academic research.

Organisations and charities in Scotland

Chest, heart and stroke Scotland
A Scotland-specific charity for people affected by chest and heart illnesses and strokes. Provides advice, information and support in the community.

Familial Arrhythmia Network for Scotland (FANS)
Organisation for anyone affected by, or professionals working with people with, familial arrhythmias (electrical diseases of the heart). Provides information and shared personal stories of living with these conditions.

Mental health and emotional wellbeing

Organisations that offer information and support around mental health and emotional wellbeing.

©Cardiomyopathy UK. October 2017.