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Frequently asked questions

  1. Resources
  2. Frequently asked questions

The following is a list of questions that patients and caregivers often have about chordoma, its treatment, finding support and resources, and getting involved.

If you have any questions as you read through this information, please reach out to a Chordoma Foundation Patient Navigator who will gladly answer your questions one-on-one.

Contact a Patient Navigator

Click on the arrow next to each question to view the answer.

About chordoma


Living with chordoma

Improve the outlook

Continue learning

These educational resources are a wealth of information that can help you learn even more about chordoma.

Understanding chordoma

The basics on chordoma, including who gets it, where it's located in the body, what types there are, and if it's genetic.

Learn more

Guide to getting the best care

Getting the right treatment is critical to a good outcome. This step-by-step guide will help you make the most informed decisions about your care.

Get the guide

Treatment guidelines

Over 60 of the world's leading chordoma experts have developed guidelines on the way chordoma should be treated.

Read the guidelines

Contact a Chordoma Foundation Patient Navigator

Chordoma Foundation Patient Navigators provide personalized information and support to anyone affected by chordoma, anywhere in the world, at any stage of their journey. Your Patient Navigator will use their extensive knowledge of chordoma to help answer your questions, provide information about treatment guidelines, help you find qualified doctors, talk with you about side effects, and connect you with others in the chordoma community who have been through a similar journey.