Bone cancer resources and support organisations

The North of England Bone and Soft Tissue Tumour Service cares for adults and children with bone and soft tissue tumours, including sarcoma.

Services are delivered at the Freeman Hospital and the Great North Children’s Hospital at the Royal Victoria Infirmary in Newcastle.

Switchboard: 0191 2336161

Visit the Newcastle upon Tyne hospitals website

This organisation provides information, support and counselling for people with primary bone cancer and their families. They also have a financial assistance grants service. They promote research into the causes and treatment of primary bone cancer, in particular osteosarcoma and Ewing sarcoma.

Telephone: 0113 258 5934

Support and information line: Freephone 0800 111 4855 Monday to Friday 9am to 5pm

Visit the Bone Cancer Research Trust website

Chordoma UK provides information and support through an online community. They also fundraise to support research into chordoma.

Find out more about Chordoma UK

The Chordoma Foundation is an international online support group that has a message board where you can get in touch with other people with chordoma.

Go to the Chordoma Foundation website

The Oxford Sarcoma Service is a large team of surgeons, oncologists, nurses, physiotherapists, researchers and co-ordinators who diagnose and treat bone tumours.

Nuffield Orthopaedic Centre Windmill Road Headington Oxford OX3 7HE

Phone: 0300 304 7777

Visit the Nuffield Orthopaedic Centre website

The Royal Orthopaedic Hospital is a leading centre for orthopaedic oncology. The team specialises in the diagnosis and treatment of benign and malignant tumours of bone and soft tissues.

Royal Orthopaedic Hospital Bristol Road South Northfield Birmingham B31 2AP

Cancer services phone: 0121 685 4049 or 0121 685 4152

Visit the ROHBTS website

Sarcoma UK funds research and supports people with bone or soft tissue sarcomas. They provide information, have a 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

The Scottish Sarcoma Network (SSN) aims to ensure equity of care for all patients in Scotland with sarcoma. The website lists treatment centres for bone cancer and soft tissue sarcoma in Scotland.

Treatment centres are in:

• Aberdeen

• Dundee

• Edinburgh

• Glasgow

• Inverness

Visit the Scottish Sarcoma Network (SSN) website

The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust (RJAH) is a leading orthopaedic centre of excellence.

The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust Twmpath Lane Gobowen, Oswestry Shropshire SY10 7AG

Phone: 01691 404000 (switchboard)

Visit the RJAH website

The RNOH is a designated centre for the care and treatment of people with bone and soft tissue cancers.

The Royal National Orthopaedic Hospital Brockley Hill Stanmore Middlesex HA7 4LP

Phone: 020 3947 0100

Visit the Royal National Orthopaedic Hospital website

The Skeletal Cancer Trust is committed to improving bone cancer research, providing the best possible care and support at each stage of treatment and to bettering the quality of life for all patients. They are based at the Royal National Orthopaedic Hospital (RNOH), Stanmore.

Skeletal Cancer Trust Sarcoma Unit Royal National Orthopaedic Hospital Trust Brockley Hill Stanmore Middlesex HA7 4LP

Email: rnoh.sct@nhs.net

Visit the The Skeletal Cancer Trust website

REACH offers support for families of children with deformities of, or difficulty using, their hands or arms. They support research into the causes and treatment of upper limb deficiency.

Telephone: 0300 365 0078 Email: reach@reach.org.uk Post: Office No 4, The Library Rooms, 1st Floor, 59 High Street, Totnes, TQ9 5PB

Read more on the REACH website

ASTRiiD stands for ‘Available Skills for Training, Refreshing, Improvement, Innovation and Development’.

ASTRiiD is a not for profit organisation connecting businesses with people who have long term health problems, including cancer, but who still have skills to offer employers. A person can register their skills and experiences along with how much time they might be able to give to a potential employer. This might be a number of days a week or even just a few hours a month.

A company registers and highlights the skills and experiences that they are looking for in order to complete some work. ASTRiiD then compares these two registrations to see if there is match. If there is a good match then ASTRiiD will introduce one side to the other.

Email: hello@astriid.org

Read more on the ASTRiiD 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

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

Along with a comic book line, Jumo Health produces other products such as podcasts, videos, and games. They are all designed to help children, their parents and carers learn more about their health condition.

Read more on the Jumo Health 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

Shine is a charity working to create a community of young adults in their 20s, 30s and 40s who have experienced a cancer diagnosis.

Shine has local peer support networks across the UK and runs a number of annual events including Shine Camp (a summer camping trip) and Shine Connect, a conference for young adults with cancer, their friends and family, and healthcare professionals.

Shine also runs workshops on topics such as working after cancer and managing anxiety and depression.

Phone: 07804 479 413 Email: hi@shinecancersupport.org

Read more on the Shine Cancer Support website

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.

Phone: 020 7612 0370 Monday to Friday 9am to 5pm

Email: hello@teenagecancertrust.org

Read more on the Teenage Cancer Trust website

The Children and Young People's Cancer Association (CCLG) work to coordinate national and international clinical trials. They were previously called the Children's Cancer and Leukaemia Group but merged with the charity Teenagers and Young Adults with Cancer (TYAC).

They CCLG funds research and provides information about cancer for children, young people and their families.

Phone: 0333 050 7654

Email: info@cclg.org.uk

The Children and Young People's Cancer Association website

Young Lives vs Cancer is a charity that provides clinical, practical, financial and emotional support. It is for children and young people and their families who are affected by cancer. You can chat to the social care team through their live chat Monday to Friday 10am to 4pm. Or you can email or phone them.

Phone: 0300 330 0803 Monday to Friday 9am to 5pm.

Email: getsupport@younglivesvscancer.org.uk

Find out about Young Lives vs Cancer on their 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