Chordoma Foundation

Educational materials

What should I do? If you or someone you know has chordoma, you’ve probably found yourself asking this question. It’s an important question to ask, because, when it comes to treating chordoma, what you do — or don’t do — can have a major impact on your life. We developed the following educational materials to help you make informed medical decisions and get the best care possible for yourself or your loved one.

If you have any questions as you read through this information, please request help and a CF Patient Navigator will gladly assist you.

Navigating Life with Chordoma brochure

The brochure is a useful overview of the various services the Foundation has available to patients and provides information on how to connect with us to learn more. We hope the information in the brochure will help you connect with our resources and the chordoma community.



Expert Answers Video Series

Hear answers to common questions from leading chordoma doctors and chordoma community members through our Expert Answers Video Series. Whether chordoma is new to you, or something you or a loved one has been dealing with for a while, we hope that this video series will provide greater clarity about this complex disease and help you make more informed decisions.


Expert Recommendations for the Diagnosis and Treatment of Chordoma

This booklet contains recommendations developed by a group of over 40 leading doctors who specialize in caring for chordoma patients. The Chordoma Foundation, along with the European Society for Medical Oncology, convened this group to reach agreement on the best ways to manage chordoma based on all available evidence. The resulting expert recommendations were published in 2015 in the leading clinical oncology research journal, The Lancet Oncology.

In this booklet, you will find information about how chordoma is diagnosed and tests to get before and after treatment. You will also learn about best practices for treatment and what to expect after treatment. We hope this resource provides you with the knowledge that will help you make informed decisions about your care and treatment.

Please complete the form below to download a PDF of the booklet in English, Chinese (Mandarin), Dutch, Italian, Japanese, or Spanish. You may also request a hard copy by mail (English and Spanish only).

Request a booklet 

Please complete the form below to download a PDF of the booklet or request a hard copy sent by mail.

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