Welcome to the Rarer Cancers Forum website

What does the Rarer Cancers Forum do?

• Offers advice and information to individuals with rare and less common cancers or to their families and friends, providing a 'bespoke' service by phone/email/post.
• When requested, tries to facilitate networking between patients and/or families affected by the same or similar rarer cancers, putting people in touch with others for support and sharing of experiences.
• Raises awareness about rare and less common cancers and the needs of patients.
• Produces educational resources for patients, their families and health professionals.
• Has involvement in securing the best possible services for people living with rarer cancers.

Why is the Rarer Cancers Forum needed?

If a GP (and sometimes a specialist) hasn't come across a particular cancer before, appropriate support and information may not be available.  Worse, unfamiliarity of the disease may lead to late or sometimes incorrect diagnosis, which can mean the difference between survival or not.

What is a rarer cancer?

• There are hundreds of different types of cancer, and research suggests that between 30% and 50% of all cancer cases could be classified as 'rarer'.  They fall outside the more common and highly publicised cancers such as colon, breast, lung and prostate.
• A cancer may be classed as 'rarer' either because it affects an unusual site in the body, or because the cancer itself is of an unusual type, is difficult to diagnose, or requires special treatment.
• However, the most important feature of a rarer cancer is the fact that the patient feels isolated.  There may be few survivors, or no available support network. The GP may know very little about the condition; and it is difficult to get accurate information about the prognosis or the effect of treatment.

Building support networks

People with a rarer cancer often express the wish to make contact with someone else who has the same or a similar cancer.  Likewise, families and friends of people with rarer cancers may wish to discuss their experiences with others in similar situations.  The Rarer Cancers Forum is working to help build these support networks. For more information, please click on the relevant sections of our website News page and visit the Networking section of our Message Boards.

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