Medical Conditions
Skip down to find many of the organisations and charities that work in this field....
BATTEN DISEASE is the name for a group of comparatively rare progressive, degenerative, genetic metabolic diseases that cause advancing deterioration of the brain and nervous system. Symptoms such as problems with vision or seizures (or more subtly, slow learning) most commonly appear between the ages of five and ten. Affected children eventually lose their mental faculties, becoming blind and bedridden before dying at an early age.
CHRONIC FATIGUE SYNDROME (CFS) also known as MYALGIC ENCEPHALOMYEELITIS (ME), has many fluctuating symptoms, the chief one of which is a long-term tiredness that does not go away with sleep or rest. It occurs twice as frequently in women than men, but children can also be affected. Most commonly at about 13 – 15 years old.
CYSTIC FIBROSIS is the most common inherited disorder in the UK. More than 7,500 babies are affected by the condition in which the lungs, pancreas, intestines and other organs become clogged up with thick, sticky mucus. There is no cure for cystic fibrosis, but following recent advances in the treatment and management of the condition, most affected children survive into adulthood.
More to follow....
The table shown below highlights many of the relevant organisations or charities that work in the Medical Conditions field.
If the particular organisation or charity that you're looking for is not shown here, but you feel that it would be helpful if it was, then please do let us know.
| Climb | Cystic Fybrosis Trust |
Duchenne | Lowe Syndrome Trust |
| Muscular Dystrophy |
Action For Kids (AFK) is a national charity working with children and young people with physical and learning disabilities and their parents and carers. We help to transform young lives by removing the barriers to independence. Click on the links below to find out more.
Climb are The National Information and Advice Centre for Metabolic Diseases.
We are a national organisation working on behalf of children, young people and families affected by metabolic disease.
There are over 20,000 families affected by Metabolic Diseases in the UK over 39,000 throughout Europe and over 68,000 in the USA. Scientists throughout the world are very focused on discovering the causes of metabolic diseases, how they can be prevented and how current methods of diagnosis and treatment can be improved. The extremely vital work costs millions every year.
Contact:
Climb Building,
176 Nantwich Road
Crewe CW2 6BG
Tel: 0800 652 3181
Email: info.svcs@climb.org.uk
Web: www.climb.org.uk
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Cystic Fibrosis is one of the UK's most common, life-threatening, inherited diseases
The Cystic Fibrosis Trust is the UK's only national charity dedicated to all aspects of Cystic Fibrosis (CF). We fund research to treat and cure CF and aim to ensure appropriate clinical care and support for people with Cystic Fibrosis.
In addition to our staff, we have Research, Medical and Gene Therapy Advisory Committees who make recommendations to our board of Trustees for final approval of funding projects that are of important and/or immediate clinical benefit to those with Cystic Fibrosis.
Our work is also assisted by Patrons and other celebrity supporters, along with Ambassadors who have CF themselves.
Contact:
Cystic Fibrosis Trust
11 London Road
Bromley
Kent BR1 1BY
Tel: 020 8464 7211
Email: enquiries@cftrust.org.uk
Web: www.cftrust.org.uk
The Duchenne Family Support Group (DFSG) exists to provide support for families.
The DFSG was started in 1987 by a small group of parents who had children diagnosed as having Duchenne Muscular Dystrophy (DMD).
Since then, the number of families has increased dramatically and contacts have been established all over the country, as well as abroad, creating a wealth of information.
The DFSG is a national charity run by families for families affected by DMD. It provides a positive national support network of parents, their families and professionals. The DFSG helps bring families together for mutual support, sharing of information and experience, and social activities.
Contact:
DFSG
78 York Street
London W1H 1DP
Tel: 0870 241 1857
Email: info@dfsg.org.uk
Web: www.dfsg.org.uk
The Lowe Syndrome Trust is a UK Charity formed in June 2000 by parents of a Lowe syndrome child. The charity supports families and initiates and funds medical research into Lowe Syndrome.
Lowe Syndrome is a genetic disorder that can occur with no family history, affecting boys and multiple physical and mental handicaps including cataracts in both eyes, muscle weakness (hypotonia or floppy baby syndrome), kidney problems, cysts, brittle bones, arthritis, poor growth, mental impairment with behaviour problems (autistic spectrum disorder) and epilepsy.
Sadly the life expectancy for these children is short due to the complications of the disease and the lack of funding to find a cure.
Contact:
Lowe Syndrome Trust
77 West Heath Road
London NW3 7TH
Tel: 020 7794 8858
Email: lst@lowetrust.com
Web: www.lowetrust.com
The Muscular Dystrophy Campaign is the the leading UK charity focusing on all muscle disease and allied disorders. It has pioneered the search for treatments and cures for over 40 years and provides practical, medical and emotional support to people affected by the condition. The charity is dedicated to improving the lives of all babies, children and adults affected by muscle disease.
Contact:
The Muscular Dystrophy Campaign
7-11 Prescott Place
London
SW4 6BS
Tel: 020 7720 8055
Email: info@muscular-dystrophy.org
Web: www.muscular-dystrophy.org