Many organisations have their own independent website. On this page we point to a selection of sites that focus on a specific cardiac disease or a particular type of patient, e.g. young or critical. (There is a separate page for sites that focus on general cardiac health).
Remember that hospital cardiac wards usually keep a stock of handouts about specific cardiac conditions and diseases to give to patients when they are discharged.
Amyloidosis UK
Wild and ATTR Amyloidosis.
This small charity offers support for people in the UK affected by relatively rare conditions that lead to stiffening of the heart wall. Resources include an online discussion forum.
Aortic Dissection Charitable Trust
Aortic Dissection.
Charity providing resources, guidance and support needed across diagnosis, treatment and after-care.
Arrhythmia Alliance UK
Arrhythmias – abnormal heart rhythms such as Atrial fibrillation, syncope.
A coalition of patient groups, carers, charities and healthcare professionals, all aiming to improve the diagnosis, treatment and quality of life for all those affected by arrhythmias.
Beat SCAD
Spontaneous Coronary Artery Dissection (SCAD).
Beat SCAD is a UK-based charity that supports SCAD patients and their families. This charity also funds research into the heart condition Spontaneous Coronary Artery Dissection.
British Heart Foundation (BHF) – Living with heart failure
Living with heart failure.
Helpful tips on managing symptoms, medicine side effects and personal relationships after being diagnosed with heart failure.
British Society for Heart Failure
Heart failure information for patients.
The info for patients includes a short video about how the heart functions and offers links to relevant support sites, including for implantable devices and, in particular, to information on palliative care. (A separate area intended for professionals that needs deeper medical insight.)
British Heart Valve Society (BHVS)
Heart Valve Disease.
Improving care for patients with heart valve disease. Supports patients and health professionals.
Cardiac Risk in the Young (CRY)
Preventing young sudden cardiac death.
Charity providing awareness, screening and research and also supporting affected families.
Cardiomyopathy UK
Cardiomyopathy (a heart muscle problem).
Support and practical advice on living with this condition.
European Heart Rhythm Association
Cardiac implants – pacemakers, defibrillators (ICD), rhythm monitors (ILR).
On this website you can find out what the various implants do, how they work and how they might affect your life. There are also video interviews with patients who have had them fitted.
Heart Failure Matters (HFM) patient website
Various videos and other information about Heart Failure for patients and carers by top cardiac professionals.
Watch the Quick Tour video at the start of the home page for more information. Whole site available in several languages.
Heart Valve Voice
Heart valve disease.
Comprehensive information and patient support for disorders affecting the heart valves.
Marfan Trust
Marfan Syndrome and Loeys-Dietz Syndrome.
Supports people and families who live with these syndromes by providing educational information and undertaking medical research to enable better treatments for patients.
Pulmonary Hypertension Association UK
Pulmonary Hypertension (PH).
Charity providing information regarding Pulmonary Hypertension, a rare lung condition that can also affect the heart.
The Pumping Marvellous Foundation
A patient-led heart failure charity.
Helping heart failure patients to self-manage, recognising the early symptoms and taking steps that alleviate common symptoms.
Somerville Heart Foundation
Congenital Heart Disease.
Charity dedicated to supporting young people and adults who were born with some form of heart condition, known as Congenital Heart Disease (CHD).
SADS UK (Sudden Arrhythmic Death Syndrome)
Bereavement support.
This charity supports people living with heart rhythm conditions and those who have been bereaved through sudden cardiac death.
Sudden Cardiac Arrest UK
This charity is dedicated to providing support and information on recovering from a sudden cardiac arrest.
Supportive Palliative Care in Heart Failure (downloadable pdf)
Printable resource published by Pumping Marvellous, authored by patients and specialist nurses.
This link shows the content of a comprehensive 20-page document explaining palliative care in a positive light. It is formatted ready for printing out and text is probably too difficult to read easily on a web browser even if you know how to zoom in. (Computer beginners should seek further advice on how to print it out on their system.)
ICU steps
Intensive Care.
Information for patients and relatives about intensive care, recovery and coming to terms with surviving critical illness.