Oncologist-approved cancer information from the American Society of Clinical Oncology
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Finding Information and Support Resources for Rare Cancers

After a diagnosis of cancer, it is important to find credible information and seek support. People with rare types of cancer may find this challenging. Cancer.Net provides comprehensive information on rare cancer types, in addition to those most common. You can find information on the following topics:

Additional educational and supportive resources are listed below.

National Organization for Rare Disorders (NORD)
www.rarediseases.org
203-744-0100

NORD is a nonprofit organization that provides information about rare diseases, patient resource organizations, and educational research programs. NORD databases give you access to more than 200 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
www.rare-cancer.org
800-345-6324

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 on specific cancers.

CureSearch
www.curesearch.org
800-458-6223

Through a combined effort of the Children's Oncology Group and the National Childhood Cancer Foundation, CureSearch provides information on childhood cancers, treatment strategies, and wellness programs. A listing of local, national, and international organizations offers educational and supportive resources for children and adolescents with cancer and their families. Discussion forums provide an opportunity for patients and families to communicate with others who may share a similar experience.

National Cancer Institute (NCI)
www.cancer.gov
800-4 CANCER

The NCI website, a service of the National Institutes of Health, provides up-to-date information on rare adult and childhood cancers. An important feature 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 live help to discuss any questions or concerns you may have.

Association of Cancer Online Resources (ACOR)
www.acor.org
212-226-5525

ACOR is an online resource guide providing information and support to people with cancer and their families and friends. You can access information for many cancers, find support groups, learn about research findings, and find clinical trials. Online discussion groups provide a forum where patients and caregivers can share experiences.

National Library of Medicine
www.nlm.nih.gov
301-594-5983

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

National Comprehensive Cancer Network (NCCN)
www.nccn.com
215-690-0300

The NCCN is dedicated to improving the quality and effectiveness of care provided to patients with cancer. Information on rare childhood and adult cancer programs, cancer resources, and clinical trials can be found in the Cancer Resource section of its patient website.

American Association for Cancer Research (AACR)
www.aacr.org
866-423-3965

The AACR provides patients and their families with information about rare cancers, clinical trials, and research findings. A section for patients and family members provides a comprehensive list of cancer resources.

More Information

Cancer Types

Evaluating Cancer Information on the Internet

Online Communities for Support

Last Updated: February 03, 2011

© 2005-2014 American Society of Clinical Oncology (ASCO). All rights reserved worldwide.

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