There are many other organisation that may be of interest or a source of help to people affected by TSC. Click on the organisation’s name to go to their website and find out more about their services.

The TSA does not endorse any of the sites listed below or give any guarantee that information contained upon them is correct.

Click on Scotland, Wales & N.Ireland for additional country specific links.

Other Tuberous Sclerosis organisations/websites

TS Alliance (USA)
ATSS (The Australasian Tuberous Sclerosis Society)
TS Canada
Massachussets General Hospital -Living with TSC

Genetics Organisations

Genetic Interest Group (GIG) - a UK national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders
British Society for Human Genetics (BSHG) - is an independent body representing UK human genetics professionals, its website contains a directory of UK Genetics Centres.

Epilepsy Organisations

Epilepsy Action - works throughout the UK to improve the quality of life and promote the interests of people living with epilepsy.
National Society for Epilepsy -the largest medical charity for epilepsy in the UK, provides information and support and care for people with epilepsy through medical, residential and rehabilitation services.
Epilepsy Research UK -the only national charity solely dedicated to epilepsy research.
The Joint Epilepsy Council of the UK and Ireland - an umbrella organisation which represents the voluntary sector and presents evidence based views on the need to improve services for people with epilepsy, their families and carers.
The National Centre for Young People with Epilepsy - Provides education, assessment, rehabilitation, treatment and care for children and young people aged 5 to 25 with complex epilepsy and other neurological conditions.
The David Lewis Centre - The largest UK provider of a range of medical, educational, residential and assessment services for people with complex epilepsy and other neurological conditions, including learning disability and challenging behaviour.

Other Neurological Organisations

Brain and Spine Foundation -Research, education and information programmes aimed at improving the prevention, treatment and care of people affected by disorders of the brain and spine.
Cerebra - information and support to anyone concerned about children with neurological conditions.
Association of Spina Bifida and Hydrocephalus (ASBAH)

Kidney Organisations

National Kidney Federation - a UK charity promoting both the best renal medical practice and treatment, and supports relatives and friends who care for kidney patients.
British Kidney Patient Association - supports patients and their relatives and lobbies for more and improved facilities and increased Government funding.

Skin Organisations

British Association of Dermatologists -their website is a source for members of the public searching for reliable information about the skin and skin diseases.
Red Cross Camouflage Service - the aplication of specialist cover creams to improve the appearance of skin conditions. The Red Cross website has information about the service and how to access it.

Lung organisations

LAM Action - a UK charity for patients and families with Lymphangioleiomyomatosis (also known as LAM) and doctors caring for patients with LAM.
British Lung Foundation - provide support for people affected by lung disease, campaign and fund research to improve treatment, care and support.

Autism Organisations

National Autistic Society - has sections on their website for England, Scotland, Wales and Northern Ireland.

Children’s Organisations 

Contact a Family - a UK-wide charity providing advice, information and support to the parents of all disabled children - no matter what their disability or health condition.

Disability Organisations

Mencap - the leading charity for people with a learning disability and their families. Runs the Learning Disability Helpline and has services and groups in England, Wales & Northern Ireland.
PMLD network - a group of people committed to improving the lives of people with profound and multiple learning disabilities (PMLD); share good practice, campaign and provide information and support.
Challenging Behaviour Foundation - supports families and carers, promotes good practice, raises awareness and promotes research.
British Institute of Learning Disabilities -works to improve the lives of people in the UK with a learning disability by research, information, training, publications and work with advocacy groups.