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Soft tissue sarcoma organisations

Men and woman discussing soft tissue sarcomas

This page gives information about organisations and websites that help and support people with soft tissue sarcomas. There is information about


Using this page

The websites on cancer listed on this page are valuable sources of detailed information on cancer. They may use more technical terms, longer pages and fewer images than our site.

You can find details about general cancer support organisations on our general cancer organisations page. We have information about counselling organisations in the counselling section.


Cancer Research UK information and support

Cancer Research UK
Angel Building
407 St John Street

Helpline: 0808 800 40 40
Admin phone number: 020 7242 0200

Cancer Research UK is the largest cancer research organisation in the world, outside the USA. We are the European leader in the development of new anti-cancer drugs. We fund research on all aspects of the disease from its causes, to treatment and prevention, education and psychological support for patients.

We are also committed to producing high quality information for people affected by cancer, health professionals and the general public. We do this through our website, which includes patient information and news and resources, and through our range of health awareness leaflets.

If you have a question about cancer, and you are in the UK or Ireland, you can contact our team of specialist cancer information nurses using this form, or by telephoning freephone 0808 800 40 40.

If you would like to talk to someone affected by cancer, share experiences or find information, you can visit our Cancer Chat forum.


Specific sarcoma organisations and sites

Sarcoma UK
49–51 East Road
N1 6AH

Telephone: 020 7250 8271

This organisation was started by a UK man who had a soft tissue sarcoma. The website has useful contacts for support and a list of links to other quality websites with information about sarcomas. There is also a newsletter published on the site and access to an email support forum. You have to register to use this, but it is free.

GIST support UK
GIST Support UK is a network of people with GIST and their relatives. Everyone involved has experience of GIST (gastro intestinal stromal tumours – a type of sarcoma). The website has brief information about GIST and its treatment and a list of links. The organisation runs phone and email support networks and and forum and it has two meetings a year.

Website address:


Support for people who have amputation or disfigurement

Changing Faces
The Squire Centre
33–37, University Street,

Helpline: 0845 4500 275 (from outside UK, 44 020 7391 9270)
Fax: 0845 4500 276

Provides help, support and information for people who have any form of facial disfigurement including disfigurement caused by cancer.

Disabled Living Foundation
Ground Floor
Landmark House
Hammersmith Bridge Road
W6 9EJ

Helpline: 0300 999 0004 (Mon–Fri, 10am–4pm)
Phone: (020) 7289 6111

Information and advice on all aspects of disability.

Lets Face It
72 Victoria Avenue
Westgate on Sea

Phone: 01843 833 724

Provides support to people with facial disfigurement, including people that have or had cancer on their face.

Limbless Association
Unit 16
Waterhouse Business Centre
2 Cromer Way
Phone: 01245 216 670 or 01245 216 671 or 01245 216 672
Helpline: 0800 644 0185

Runs support groups, publications, information and advice for people of all ages who have had amputations. They run a helpline and drop in centre. The centre is open on Mondays, Wednesdays and Fridays from 9am to 2pm. They ask that you phone to arrange an appointment.

Disability Rights UK
Ground Floor,
CAN Mezzanine
49-51 East Road,
London N1 6AH

Phone: 020 7250 8181

National disability organisation. Has an information and advice service, and campaigns for disabled people's rights.

Bowcliffe Hall
West Yorkshire
LS23 6LP

Phone: 0870 041 0150

This commercial company makes waterproof covers for dressings or casts on arms and legs. This means you can go swimming or take a bath or shower without worrying. The cover can also be used for an arm with a PICC line. Ask your specialist or nurse about getting one on the NHS or you can buy one direct from the company. There are full details and a price list on their website.


General support organisations and sites

Macmillan Cancer Support
Head Office
89 Albert Embankment

Macmillan CancerLine: 0808 808 0000 (Mon to Fri, 9am to 9pm – information is available in other languages)
Textphone: 0808 808 0121

Macmillan Cancer Support improves the lives of people affected by cancer. They provide practical, medical and financial support and push for better cancer care. They provide booklets on cancer and treatments and run helplines providing cancer information and benefits advice.

Macmillan Cancer Support  Cancer Info for teens and young adults with cancer (formerly Teen Info on Cancer TIC)
Macmillan Cancer Support has a separate section on their website for teenagers and young adults with cancer. It offers advice and support on how to cope with cancer, and the chance to share experiences of cancer with other teenagers.

Teenage Cancer Trust
93 Newman Street
Phone: 020 7612 0370

A national charity providing specialist units, support, education and information for teenagers with cancer and their families. The TCT also funds research into young people's cancers. It holds annual conferences for teenagers with cancer and the health professionals who look after them.

US National Cancer Institute website
The link below takes you to the American National Cancer Institute's patient information about soft tissue sarcoma. It is detailed and comprehensive but there are no images

Website: National Cancer Institute

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Updated: 1 April 2015