Chordoma Foundation

05/28/2026

Two generations growing hope! 🌱 So grateful to Martine, the spouse of a chordoma patient, for turning her recent miniature garden sale into a fundraiser for the Chordoma Foundation—and her granddaughter Michaela pitched in too, donating proceeds from her marigold seed sale!

Have an idea for your own fundraiser? Let's make it happen: chordoma.org/fundraise

05/22/2026

In our latest Uncommon Story, Renee shares the story of her chordoma diagnosis, her treatment journey, and the shift that turned her "cancerversary" from a day of mourning into a day of celebration.

Renee turned the hardest day of her life into a yearly celebration of survival.

05/15/2026

If you haven't already joined, our private online community is worth checking out! In Chordoma Connections, over 1,500 patients and loved ones share questions, experiences, and support. You can search for others by tumor location, proximity to you, and more; message members privately; and access helpful resources.

Chordoma Connections is a private, online community where chordoma patients and their loved ones can come together in one place to exchange information,…

05/14/2026

Just months after surgery for her skull base chordoma tumor, Lauren was back to holding her daughters, traveling the world, and rebuilding her strength one step at a time.

You can read about Lauren's chordoma experience via the link below, and consider sharing your own patient story here: chordoma.org/support/share-your-uncommon-story

Just months after surgery, Lauren was back to holding her daughters, traveling the world, and rebuilding her strength one incredible step at a time.

05/12/2026

Ever wanted a chance to tell chordoma researchers and clinicians why their work matters to you? You're invited to leave a note to them on our Community Appreciation Wall, which will be displayed at our upcoming Research Workshop! Fill out the quick form here to leave them a message:

Lift up the people moving chordoma research forward

05/06/2026

Registration is open for our International Chordoma Community Conference, September 18–20 in Boston! Join us to connect with others affected by chordoma and hear the latest updates in research and care. More info: chordoma.org/event/iccc-2026

We’re thrilled to share that Mass General Brigham will serve as the presenting sponsor for this year’s conference. We are deeply grateful to all of our sponsors, including NYU Langone Health, Penn Medicine/UPenn Radiation Oncology Research Division, Northwestern Medicine Department of Neurological Surgery, and Brown University Neurosurgery Foundation for helping make this special gathering possible.

05/04/2026

Read about exciting research progress, two opportunities to join our team, upcoming events, an inspiring patient story, and more in our latest newsletter!

Read about recent progress, new resources, and opportunities to participate in our shared mission

04/15/2026

This is pretty incredible: A team at UT MD Anderson Cancer Center successfully resected a chordoma tumor that required a highly coordinated, multidisciplinary surgery. It’s a great example of what can happen when the right experts come together, and a powerful reminder of why access to experienced care teams matters so much.

Read about the case via the link below.

(We’re proud to help patients connect with clinicians like these—and to celebrate the impact they have. If you’d like to recognize a provider who’s been part of your care, you can do so here: chordoma.org/wall) 💙

04/12/2026

When you're living with chordoma, finding people who truly understand what you're going through can make the journey a little easier. That's what our virtual support groups are for.

We have sessions coming up this week for patients and for caregivers. Both are free and facilitated by experienced oncology professionals:

📅 Patients & survivors: April 14 @ 6 PM ET
📅 Caregivers & co-survivors: April 15 @ 7 PM ET

(Groups are also available in Germany, Italy, the Netherlands, Spain, and Israel!)

🔗 Register: chordoma.org/events

04/07/2026

🗓️ Join us: Registration is open for our International Chordoma Community Conference on September 18–20 in Boston! Patients and loved ones from around the world are invited to come together for a meaningful weekend focused on research updates, learning, and connection. More info: chordoma.org/event/iccc-2026

💙 We’re also creating a Community Appreciation Wall that will be displayed to researchers and clinicians attending our research workshop just prior to the community conference. You can leave a note here sharing what their research means to you and your hopes for the future: chordoma.org/wall

🤝 Thank you, sponsors! We deeply appreciate Penn Medicine/UPenn Radiation Oncology Research Division, Northwestern Medicine Department of Neurological Surgery, and Brown University Neurosurgery Foundation for supporting our International Chordoma Community Conference.