Understand chordoma
Learn about the disease including what it is, who is affected, risk factors, prognosis, and more.
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Newly Diagnosed? We Can Help.
We offer expertise, resources, and support so you can get the best care and outcomes possible.
If you're new to chordoma, it's normal to feel overwhelmed. Our Patient Navigation Service — a free, confidential resource — is an excellent place to start. Our Patient Navigators can answer your questions, provide information about treatment guidelines, help you find qualified doctors, and connect you with others in the chordoma community who have been through a similar journey.
(And if chordoma has been part of your life for awhile, our Patient Navigators are here for you, too.)
What to do next
We're here to support you throughout your entire journey with chordoma, from diagnosis through survivorship. We provide a wealth of information to help you understand chordoma, make informed decisions, and get the best care possible.
Read more in this step-by-step guide.
Plan your treatment
Read about surgery, radiation, and other treatments for chordoma, and when those treatments should be considered.
Find a specialist
Search our Doctor Directory of nearly 150 chordoma specialists around the world to find an experienced care team.
Improve side effects
Address the quality of life issues that most frequently affect people during or after chordoma treatments.
We believe cures are possible
We envision a future in which everyone affected by chordoma is able to overcome it and maintain their quality of life. And because of the commitment of everyone in our community, we've made a lot of progress: We've turned what was once a neglected, lonely disease into one we can solve — together.
Layered approach
To achieve better treatments, outcomes, and care for chordoma patients, we invest in three mutually reinforcing programmatic areas encompassing research, patient services, and healthcare improvement.
Strategic research
We're advancing a comprehensive research roadmap that spans every stage of treatment development, and we run the only laboratory in the world 100% dedicated to accelerating cures for chordoma.
Active participation
The more people who contribute, the faster we'll be able to achieve our ambitious shared mission. Thankfully, there are numerous opportunities for everyone affected by this disease to help dramatically improve outcomes.
The best community you never asked to be a part of
Support from someone who knows what you're going through can make all the difference. Fortunately, the chordoma community is full of people eager to share their experiences, serve as a sounding board, and help you find your way.
Serving the worldwide chordoma community
Wherever you're located, we're here to support you throughout your entire journey with chordoma. Check out our world map to see our growing number of chordoma patient data, stories, and resources in your country.
Better futures through fundraising
Individuals who host online and in-person fundraisers play a crucial role in advancing our mission to develop new therapies and provide essential services for those navigating this disease. Here are just a few of the countless individuals who've enlisted the generosity of their networks to make a difference for everyone affected by chordoma.
Learn more about becoming a fundraiser here, or make a gift in support of a named fund or fundraiser here.
MAC Fund
Created in memory of Mac Sinise, this fundraiser supports the launch and enrollment of promising new clinical trials.
V is for Victory Fund
Victoria's friends and family are rooting her on during treatment while supporting other patients' ability to access clinical trials.
One in a Million fundraiser
In an annual email campaign, Mick and Noreen Potempa invite their friends and family to support our mission.
Team Chordoma
This energetic annual race tradition brings our community together to run, walk, and cheer our way to better outcomes.
Support patient-driven chordoma research
Every gift accelerates cures
Together, we’ve already changed much of what it means to face chordoma. Yet the pressing need remains for better treatments. Today, our sights are set on treatments that don't just slow the disease down, but:
- Eliminate tumors,
- prevent recurrence,
- and preserve patients’ quality of life.
With adequate investment, these new therapies are years, not decades away.
Thank you for providing a real reason for hope for everyone facing chordoma.