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Our story

Changing what it means to face chordoma

Despite long odds, the chordoma community has fueled progress that's virtually unprecedented for a rare cancer. And we'll keep pressing forward until everyone facing chordoma has the treatments we need.

Our story

It started around a dining room table.

In 2007, a handful of families affected by chordoma came together with the conviction that the options available to us weren’t acceptable. We realized that by teaming up, we’d have a chance of creating a better future for those of us affected by this disease then and everyone who came next.

Now, it's an international movement.

Because of the commitment of patients, families, researchers, and doctors, what began as an uphill battle has given rise to encouraging momentum. And what were once far-off dreams — like clinical trials, treatment guidelines, and access to the accumulated wisdom of fellow patients and leading doctors — have become reality.

Sixteen years of uncommon progress

As a result of our collective investments, we've come a long way together.

Better treatments, better experiences, better care

We envision a future in which everyone affected by chordoma is able to overcome it and maintain their quality of life. To bring about our vision, we invest in three mutually reinforcing areas:


To advance the discovery and development of better treatments

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Patient services

To create a better experience for all affected

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Healthcare improvement

To help healthcare providers deliver better care

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We need everyone

An unparalleled level of participation from the chordoma community has always been the key driver of new discoveries that are changing the outlook for this disease. In the years ahead, our sights are set on treatments that can prevent recurrence, eliminate tumors rather than just slow their growth, and preserve patients’ quality of life.

The speed at which we can achieve our ambitious shared goals is limited only by resources. Thankfully, there are numerous opportunities for each of us to help dramatically improve our own outcomes.


Gifts of all sizes are needed to build on our extraordinary recent momentum and reach new milestones.

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By rallying your personal network to support the Chordoma Foundation, you'll accelerate our work to find cures.

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Enroll in research studies, build and strengthen the chordoma community, and more.

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We're eager to help you get involved in the ways that are right for you. Get in touch to open a conversation.

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Make an impact on our mission

How far we've come is thanks to you.

For the first time, there's a credible path to making chordoma a manageable disease — to treatments that don’t just slow the disease down, but have a real chance of enabling patients to get on with their lives. With adequate investment, these treatments are years, not decades away. Your donation will accelerate cures and provide hope to those facing chordoma today.