Soft tissue sarcoma resources and support organisations

GIST Cancer UK is a network of people with GIST and their relatives. Everyone involved has experience of GIST (gastrointestinal stromal tumours). The website has brief information about GIST and its treatment and a list of links. The organisation runs phone and email support networks and a forum.

Support line: 0300 400 0000

Email:  admin@gistcancer.org.uk

GIST cancer UK website

Sarcoma UK funds research and supports people with bone or soft tissue sarcomas. They provide information,, support network and a sarcoma clinical trials hub

Support line: Freephone 0808 801 0401 Monday to Friday 10am to 3pm Text support line: 07860058830 Email: supportline@sarcoma.org.uk 

Sarcoma UK website

This commercial company makes waterproof coverings for dressings or casts on the arms or legs. This means you can go swimming, take a bath or shower without worrying. They can also be used to cover PICC lines. Ask your specialist or nurse about getting one on the NHS or you can buy direct from the company. 

Telephone: 0870 041 0150

Email: enquires@autonomed.co.uk

Read more on the Autono-Med Ltd website

Disability Rights UK provides an information and advice service and campaigns for disabled people's rights. 

They also provide a Just Can't Wait card and radar keys that give access to toilets throughout the UK for people who might need to use a toilet in a hurry. They also have several helplines providing information and advice.

Tel: 0330 995 0400 Email: enquiries@disabilityrightsuk.org

Visit the Disability Rights UK website

Changing Faces provide support and information for people who have any form of facial disfigurement including disfigurement caused by cancer. They also provide a skin camouflage service for people in England and Scotland. Trained volunteers teach people how to apply specialist cover creams.

Phone: 0300 0120 275 (support and advice line) Head office email: info@changingfaces.org.uk

The contact details for the skin camouflage service are:

Phone: 0300 0120 276 Email: skincam@changingfaces.org.uk

Visit the Changing Faces website

Living Made Easy is part of the Shaw Trust. It provides information and advice on equipment and aids to help with daily living.

Email: lme-enquires@shaw-trust.org.uk

Go to the Living Made Easy website

Let's Face It provides support for people with facial disfigurement including those who have, or had, cancer.

Visit the Let's Face It website

The Limbless Association produces a quarterly magazine and publications. It provides information, advice and support for people of all ages who have had amputations, or suffer with congenital limb loss. 

Helpline: 0800 644 0185 Monday to Friday 9am to 5pm

Limbless Association Mayflower Community Hospital Blunts Wall Road Billericay CM12 9SA

Read more on the Limbless Association website

Macmillan Cancer Support is a charity that gives practical and medical support to people with cancer in the UK. Its helpline offers support with clinical, emotional, general and welfare benefits needs. They also publish booklets about cancer and treatments. Information is available in other languages.

Freephone: 0808 808 00 00 (7 days a week, 8am to 8pm) Contact email form

Visit the Macmillan Cancer Support website

Macmillan Cancer Support has a separate section on its 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.

Find out about Macmillan information for teens and young adults

Teenage Cancer Trust is a national charity providing specialist units, expert staff, support events, education and information for 13 to 24 year olds diagnosed with cancer, and their friends and families.

Teenage Cancer Trust also work closely with healthcare professionals and researchers to lead the way on developing cancer care for teenagers and young adults.

Teenage Cancer Trust The Place 175 High Holborn London WC1V 7AA

Phone: 020 7612 0370 Monday to Friday 9am to 5pm Email: hello@teenagecancertrust.org

Read more on the Teenage Cancer Trust 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.

Visit the National Cancer Institute website

Young Lives vs Cancer provides practical, clinical, financial and emotional support for children, young people and their families affected by cancer. 

Telephone: 0300 330 0803 Monday to Friday 9am to 5pm Email: GetSupport@younglivesvscancer.org.uk

Read more on the Young Lives vs Cancer website

Sarcoma UK has a variety of patient guides to download from their website.

View the patient guides on the Sarcoma UK website

Healthy eating and cancer Lost for words: how to talk to someone with cancer Sexuality and cancer Understanding soft tissue sarcomas Understanding chemotherapy (also on CD) Understanding cancer research trials (clinical trials) Understanding radiotherapy (also on CD) Talking to children when an adult has cancer Talking about your cancer

For general health advice and information.

NHS website