Finding Information and Support Resources for Rare Cancers

Approved by the Cancer.Net Editorial Board, 12/2015

After a cancer diagnosis, it’s 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.

On Cancer.Net, you can find the following resources for rare cancers:

Additional educational and support resources are listed below. These links will take you outside of Cancer.Net.

National Organization for Rare Disorders (NORD)
Phone: 203-744-0100
Social media: NORD on Facebook ( and Twitter (

NORD is a nonprofit organization that provides information about rare diseases, patient resource organizations, and educational research programs. NORD databases give you access to patient organizations and other support services. Online support is also available for people with a rare disease, their families and friends, and their caregivers.

Rare Cancer Alliance

Social media: Rare Cancer Alliance on Facebook ( and Twitter (

The Rare Cancer Alliance provides information and support to children and adults with cancer. Its website includes patient forums, where you can communicate with others who may have the same type of cancer. In addition, it offers links to other websites with disease-specific information and educational resources about specific cancers.

CureSearch for Children’s Cancer
Toll-free: 800-458-6223
Social media: CureSearch on Facebook ( and Twitter (

CureSearch for Children’s Cancer provides information on childhood cancers, treatment strategies, and wellness programs. A listing of Community Help options offers resources for families and those with cancer. Discussion forums give patients and families a way to communicate with others who may share a similar experience.

National Cancer Institute (NCI)
Toll-free: 1-800-4 CANCER (1-800-422-6237)
Social media: NCI on Facebook ( and Twitter (

The NCI website, a service of the National Institutes of Health, provides up-to-date information on rare adult and childhood cancers. An important part of the website is the NCI clinical trials section, which provides a database of research studies that are open to patients, clinical trial results, and more. In addition, the NCI's Cancer Information Service (CIS) provides online support and you can speak directly with a specialist about your questions or concerns.

Association of Cancer Online Resources (ACOR)

ACOR is a collection of online communities for patients, families and friends of those diagnosed with cancer. You can access information about many cancers, find support groups, learn about research findings, and find clinical trials. These online discussion groups provide a forum where patients and caregivers can share experiences.

National Library of Medicine (NLM)
Phone: 888-346-3656
Social media: NLM on Facebook ( and Twitter (

The National Library of Medicine offers information on all areas of health care. Through its website, you can search medical research using a service called PubMed.

More Information

Evaluating Cancer Information on the Internet

Cancer.Net Blog: Living With a Rare Cancer – My Dr. Seuss World