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Rare cancer organisations

This page gives information about organisations and websites that help and support people with rare cancers. There is information on


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 website.

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

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 cancer from its causes, to treatment and prevention.

We are also committed to producing high quality information for people affected by cancer, and for health professionals and the general public.

We do this through our website, which includes patient information, 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 rare cancer organisations and sites

Rare Cancer Support Forum

This is an online forum for patients and caregivers to share experiences and gain support.

Website: http://www.rare-cancer.org/forum/


This is an alliance of 90 organisations working to address inequality in funding for rare cancers and improving outcomes for patients.

Website: http://www.cancer52.org.uk/ 

Email: info@cancer52.org.uk


General support organisations and sites

Macmillan Cancer Support
Head Office
89 Albert Embankment

Phone: 0808 808 0000 (Mon to Fri, 9am to 8pm; information is available in other languages)
Textphone: 0808 808 0121
Website: www.macmillan.org.uk

Macmillan Cancer Support aim to improve the lives of people affected by cancer. They provide practical, medical and financial support. They provide booklets on cancer and treatments and run helplines providing cancer information and benefits advice.

National Cancer Institute (USA)
The American National Cancer Institute has a great deal of patient information about many different types of cancer. They have an A to Z list which includes information about some rare cancers.

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Question about cancer? Contact our information nurse team

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Updated: 27 February 2014