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Improve the outlook

Changing our odds — together

We believe chordoma is a solvable problem. How fast it gets solved depends on the contributions of every one of us affected.

Uncommon commitment

The power of patients

An uncommon level of commitment from the chordoma patient community has been the key driver of new discoveries that are changing the outlook for this disease. Whether by participating in research, donating, hosting a fundraiser, or supporting others in the same boat, each of us have numerous opportunities to roll up our sleeves and work together for better outcomes and experiences.

We’re eager to help you get involved in all the ways that are right for you — read on for ideas and inspiration.

Participate in research studies

From donating tumor tissue to joining a remote study or a clinical trial, our participation in research is essential to scientists’ ability to learn what drives this disease, understand how it behaves in the body over time, and identify and test better chordoma treatments.

For more information on contributing tumor tissue or participating in a study, contact our Patient Navigation Service.

Donate tumor tissue

It's relatively simple to donate your tumor tissue for researchers to study.

Learn more

Join a clinical trial

We can help you and your care team find a trial that's right for you.

Learn more

Sign up for the Natural History Study

Patients at any stage of treatment (and beyond) are encouraged to enroll; participation is virtual.


Tell us about your outcome

We'll soon launch an important patient survey. Subscribe to our newsletter to be notified.


Strengthen the chordoma community

Share your time and experiences with others.

  • Become a Peer Guide. Peer Guides volunteer to connect one-on-one with individuals affected by chordoma. By providing empathy and wisdom to others, you’ll form close personal ties that ease loneliness and stress. Our self-paced, online training program makes it easy to get started.
  • Join the ranks of our Ambassadors. As a global Ambassador, you’ll help chordoma patients and families outside the U.S. connect with local resources — and each other. You’ll also help distribute educational materials to medical centers and identify chordoma-experienced doctors in your country.
  • Attend an event. Our monthly virtual support groups and annual Chordoma Community Conferences are a wonderful opportunity to feel more connected to your peers.
  • Share your chordoma story. Offer hope, connection, and wisdom to others by writing about your chordoma experience.
  • Be counted on our map. By making our rare disease visible, we can bring more attention and resources to our shared mission.

Give a gift of hope

Much better chordoma treatments are finally within reach, and we have a roadmap for bringing them to patients soon.

If we all pitch in, our shared resources will help us bring these new treatments into doctors' toolkits as quickly as possible.

More ways to give can be found right this way.


Donations today add up to better treatments tomorrow.

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Fundraisers make an outsized impact on our ability to change the outlook.

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Monthly donations of every size are sustaining our efforts to find cures.

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Plan a gift

Leave a legacy through a planned gift to the Chordoma Foundation.

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Inspiration in your inbox

For more ideas on how to get involved, and to learn about the progress your commitment is enabling, sign up for our newsletter.