Chordoma Links and Resources

The following list of websites is provided as a service to you. The NCI is not responsible for the information at these sites and does not endorse any products or services found there. The NCI cannot ensure the privacy or security of information that you may provide to the listed sites. However, you may find that the following sites are helpful.

National Cancer Institute (NCI)
The NCI provides information on cancer to the public at no charge. Call 1-800-4-CANCER (1-800-422-6237) to speak with an information specialist about cancer-related questions. The website provides information on current research, including clinical trials located both within and outside NCI, for a variety of cancer sites. It is an excellent resource for patients who wish to find out whether there are clinical trials available that are testing new drugs for a particular type of cancer.

American Cancer Society (ACS)
The ACS is a nationwide community-based voluntary health organization. Its website and the ACS free phone line (1-800-227-2345) provide information on cancer treatment, early detection, and prevention, as well as cancer statistics and information on a variety of services available to cancer patients and their families.

Cancer Net
This website is from the American Society of Clinical Oncology (ASCO), an organization of physicians and other professionals involved in the care of people with cancer. This site provides information on more than 50 different types of cancer. It includes information about symptoms, treatments and side effects, clinical trials, coping, risk factors and prevention. Additional resources include live chats, message boards, a drug database, medical dictionary, and links to patient support organizations.

The Chordoma Foundation
This is a nonprofit organization started by a mother and her son after he was diagnosed with chordoma in 2006. The foundation’s mission is to improve the lives of chordoma patients by stimulating research to develop effective treatments and eventually a cure for chordoma. The foundation fosters a coordinated international research effort to find a cure while improving the diagnosis, treatment and quality of life for people affected by chordoma. In addition to initiating and supporting research and research collaborations, the foundation provides support and guidance for a growing community of patients/care givers who are seeking treatment options and medical care.

Chordoma Survivors’ Group on Facebook (Private)

This group was formed in 2012 by chordoma survivors with a major goal being to offer support to chordoma patients and family members from the time of the initial diagnosis through long term treatment and survival. Group members endeavor to mutually support each other in every way possible. Since the group was founded more than 350 people have joined it from the US and elsewhere and more individuals continue to join it each week. Because the group is private, no one can read a post unless he/she is a member.