List of organisations by disease
Information about organisations for different conditions and disease groups
Life expectancy for both men and women has continued to rise and has increased by over 30 years in the last century and is expected to continue to rise by another 3 years over the next decade. In 2008 there were 509,090 deaths registered in England and Wales. As we get older the causes of death change, and for the very old there may be more than one condition that affects us and contributes to our death.
The major causes of death in the UK are cancers, circulatory disease (including heart attack and stroke) respiratory disease, injury and poisoning, nervous system (for example Motor Neurone Disease) and mental or behavioural disorders (including suicide).
There are many organisations that can help you learn more about these diseases and some of these are signposted below. These sites will provide you with information about the most common causes of death in the UK. If you have a very rare condition your doctor may be able to direct you to more specific organisations.
The disease groups are listed in alphabetical order.
- Alzheimers Disease – see also Dementia
- Chronic Obstructive Pulmonary Disease
- Heart disease
- Kidney/renal disease
- Liver disease
- Motor Neurone Disease
- Multiple Sclerosis
- Parkinson’s Disease
- Other organisations that can help
Alzheimers Disease – see also Dementia
The Alzheimer's Society is the UK's leading care and research charity for people with dementia and those who care for them. It works to improve the quality of life of people affected by dementia in England, Wales and Northern Ireland. Many of its 25,000 members have personal experience of dementia, as carers, health professionals or people with dementia themselves.
for dementia is a national charity, committed to improving the quality of life for all people affected by dementia.
Around 285,000 new cases of cancer are diagnosed each year in the UK. Although cancer is one of the major causes of death in the UK, there are now many people who make a full recovery. The following websites provide information about cancer and about the different types of cancer.
Cancer Research UK is a leading charity dedicated to beating cancer by improving the understanding of cancer through research and developing better ways to prevent, diagnose and treat the disease. Their websites have a wealth of information about cancer.
Macmillan Cancer Support aims to help improve the lives of people affected by cancer, both those living with cancer and also their families and carers. Their primary focus is to reach and improve the lives of everyone living with cancer by providing practical, emotional and financial support.
Marie Curie Cancer Care employs more than 2,700 nurses, doctors and other healthcare professionals to provide care to around 25,000 terminally ill patients in the community and in hospices, along with support for their families.
They care for people with cancer and people with other life limiting conditions. They also provide a comprehensive list of organisations that can help with specific conditions.
COPD covers emphysema, chronic bronchitis, asthmatic bronchitis and other airways diseases. But it does not cover lung cancer. COPD kills 30,000 people a year in England and Wales.
Breathless with Emphysema and COPD is a site is primarily for patients and especially for those suffering from chronic Emphysema, Asthma or Bronchitis, now known as COPD. It is hosted by a patient and provides information about the condition, how to manage it, treatments and many other subjects, including an update on his own condition.
The British Lung Foundation is a UK charity working for everyone affected by lung disease. They focus their resources on providing support for people affected by lung disease today. They work in a variety of ways, including funding world-class research, to bring about positive change, to improve treatment, care and support for people affected by lung disease now and in the future.
NHS Improvement has resources, guidelines and information about COPD and lung disease which can be accessed here:
The term 'dementia' is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. Dementia currently affects 822,000 people in the UK (17% higher than previous estimates) and will pass the 1 million mark before 2025 (Dementia 2010, Alzheimer’s Research Trust, 2010).
The symptoms include a decline in memory, reasoning and communication skills and a gradual loss of skills needed to carry out daily activities. Causes include Alzheimer's disease and sometimes as a result of a stroke.
The Alzheimer’s Society provides a lot of information on dementia. The following link will take you directly to the dementia section of their website:
for dementia is a national charity, committed to improving the quality of life for all people affected by dementia. In some areas they provide Admiral Nurses who are specialist mental health nurses specialising in dementia. Admiral Nurses work with family carers and people with dementia, in the community and other settings. Working collaboratively with other professionals, Admiral Nurses seek to improve the quality of life for people with dementia and their carers. They use a range of interventions that help people live positively with the condition and develop skills to improve communication and maintain relationships.
Heart disease accounts for approximately 20% of all deaths in the UK. The British Heart Foundation works with people to reduce the risk of heart disease and how to live with heart disease. They have 5 main areas of work:
- Investing in pioneering research, and support and care for heart patients
- Providing vital information to help people reduce their own heart health risk
- Helping attain the highest possible standards of care and support for patients
- Work with government to establish policies that minimise the risk of developing heart and circulatory disease
- Working to reduce the inequalities in the levels of heart disease across the UK
The following link takes you to their information section:
The National Heart Forum (NHF) is a leading alliance of over 60 national organisations working to reduce the risk of coronary heart disease and related conditions such as stroke, diabetes and cancer. Their website is designed to help you find out more about what they do, make contact with the NHF member organisations and discover more about avoidable coronary heart disease and related conditions in the UK.
NHS Improvement has resources, guidelines and information about heart disease which can be accessed here:
Although the numbers of people diagnosed with HIV and AIDS has increased over the last decade from 3000 to 7500 the number of deaths has reduced from 2000 to 600 a year.
NAM (formerly National AIDS Manual) provides information to people who are HIV positive and to the professionals who treat, support and care for them. NAM is a community based HIV information provider based in London, in the UK, but their information is known and used across the world.
They support people living with HIV to live longer, healthier lives and provide information to enable people to:
- take control of their lives and health care
- understand and adhere to their HIV treatment
- develop better dialogues with their healthcare staff
- live longer, healthier and better quality lives
Terrence Higgins Trust was one of the first charities to be set up in response to the HIV epidemic and has been at the forefront of the fight against HIV, and improving the nation's sexual health ever since. They provide information and advice about HIV and AIDS, including information on what local services are available, such as counselling, group support and practical assistance.
Renal/kidney disease accounts for 1-2% of deaths in the UK.
The UK National Kidney Federation (NKF)provides medical and practical information, and hosts a chatroom. The NKF is the national charity in the United Kingdom Run by Kidney Patients for Kidney Patients. The Federation’s aim throughout the UK is to promote both the best renal medical practice and treatment, and the health of persons suffering from Chronic Kidney Disease (CKD) or Established Renal Failure (ERF).The NKF also supports the related needs of those relatives and friends who care for kidney patients. The following link takes you to their information section.
Liver disease is the 5th commonest cause of death in the UK and the numbers are increasing. The main causes of liver disease are alcohol, hepatitis B and C and obesity.
The British Liver Trust offers information leaflets and a helpline, and hosts a chatroom. Their aim is to reach out to as many people as possible by providing information and support, and lobbying for the services that people with liver disease need.
Sue Ryder Care provides compassionate care for people with palliative, end of life and long-term needs. In addition to providing care for people near the end of their life they offer residential and nursing care for people living with neurological conditions such as stroke, brain injury, multiple sclerosis, Huntington's disease, Parkinson's disease and motor neurone disease. Many of the people affected by these conditions are in their 30s and 40s and may need care for 10, 20 or even 30 years.
Sue Ryder Care specialise in establishing flexible services aimed at supporting people throughout their illness. They help people to maintain their independence through a range of services to support those living with long-term neurological conditions.
They provide three healthcare service models
- health and social care packages within the home environment
- palliative and end of life multidisciplinary services operated from 6 hospices
- neurological complex care services operated from 8 residential centres
They work in partnership with health and social care professionals to offer person-centred care. Their approach aims to meet the needs of the physical condition and wellbeing of the people they care for while supporting carers, friends and families.
Help the Hospices are a leading charity supporting hospice care throughout the UK. If you are a patient, carer or have an interest in hospice and palliative care the following link will provide information.