After a cancer diagnosis, it is important to find credible information and support. With rare types of cancer, sometimes finding resources can be difficult. Cancer.Net provides comprehensive information about several types of rare cancers, in addition to more common types of cancer.
On Cancer.Net, you can find the following resources for rare cancers:
Disease-specific information for many rare adult and childhood cancers, including sections on diagnosis, treatment, clinical trials, the latest research, what to expect after treatment, and questions to ask the health care team
Listings of cancer-specific national organizations that offer support to people with cancer and their families
Information about support groups and how to find one that is a good fit for you
National Cancer Institute-designated comprehensive cancer centers and cooperative groups that specialize in the treatment of rare cancer types
How to find an oncologist who specializes in the treatment of a rare cancer
A section on clinical trials
More educational and support resources are listed below. These links will take you outside of Cancer.Net.
National Organization for Rare Disorders (NORD)
Social media: NORD on Facebook and Twitter
Rare Cancer Alliance
Social media: Rare Cancer Alliance on Facebook and Twitter
CureSearch for Children’s Cancer
Social media: CureSearch on Facebook and Twitter
National Cancer Institute (NCI)
Toll-free: 1-800-4 CANCER (1-800-422-6237)
Social media: NCI on Facebook and Twitter
National Library of Medicine (NLM)
Social media: NLM on Facebook and Twitter
This list is provided for informational purposes only. Cancer.Net and ASCO do not endorse the content, operators, products, or services of such applications and websites and are not responsible directly or indirectly for any damages or injury caused by or in connection with use of any content, products, or services available through third-party applications and websites. As always, be sure to talk with your health care team about any questions you may have about information you find.
Working Together to Treat Rare Cancers
Evaluating Cancer Information on the Internet
Carving a Path for Research on Rare Cancers: "Your Stories" Podcast