Chordoma Foundation

Latest Updates


What we’re learning from the Chordoma Survivorship Survey

Last year, as part of the Chordoma Survivorship Initiative, we called on you to tell us about the ways your life has been impacted by chordoma. Through the Chordoma Survivorship Survey we aim to capture the physical, emotional, social, and practical experiences of 1,000 or more of our community members—both survivors and co-survivors—to learn more about your needs during and after treatment, whether those needs are being met, and how we can help you live the fullest lives possible. Continue reading

Scientists achieve vital step on the path to drugging brachyury in chordoma

In recent years, researchers have identified chordoma’s Achilles’ heel: a protein called brachyury, which drives and sustains the cancer. To date, attacking brachyury has been an uphill battle. But new research has helped illuminate the path forward: with support from the Chordoma Foundation, scientists demonstrated that brachyury could be directly degraded and that doing so caused chordoma cells to stop growing. Continue reading

Living well: Caring for yourself during stressful times

Last November, as part of our work to help all of you who have been touched by chordoma live your best lives before, during, and after treatment, we hosted Living Well: Caring for yourself during stressful times, a 60-minute webinar outlining strategies and tips for self-care. If you weren’t able to join us for the webinar, we encourage you to read our blog post about the key takeaways and watch the recording. Continue reading

Help researchers learn more about chordoma and improve treatment options by participating in NCI’s Natural History Study

The chordoma community is one of a number of rare cancer communities that has been invited to participate in the Natural History Study of Rare Solid Tumors, currently underway at the U.S. National Cancer Institute (NCI). The purpose of this important study is to collect clinical and biologic information including tumor tissue samples from patients with rare solid tumors, such as chordoma, to understand better how these tumors develop and grow. Continue reading

Susie Rinehart’s Fierce Joy

Susie Rinehart has always been strong. She’s a mom, a leadership coach, an international girls’ empowerment advocate, and an ultrarunner. But beneath the veneer of confidence and success, she struggled with anxiety and depression, feelings she neither shared nor confronted until a diagnosis of chordoma forced her to reconsider what mattered most. Continue reading



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