The International Chordoma Community Conference (ICCC) brings together patients, caregivers, and loved ones from around the world for a weekend focused on research, care, survivorship, and connection.
We’ll kick things off on Friday with relaxed sessions where you can meet new friends and re-connect with old ones, then join the doctors and researchers finishing up the International Chordoma Research Workshop for a reception and our Uncommon Awards dinner.
Saturday will be a day of learning and conversation. We’ll talk about how chordoma research works, share updates to international care guidelines, and explore what survivorship means as needs change over time. Throughout the day, there will be opportunities to share your experiences and perspectives, because the input of patients and caregivers is vital to shaping research, improving care, and strengthening support.
Sunday morning will focus on connection and community, with time for peer support, open conversation, and guided activities. There will be space to reflect, build relationships, give to others facing chordoma, and head home feeling grounded and inspired.
We hope you’ll join us for a weekend of helpful insights, hopeful updates, and meaningful connection!
Registration closes on Monday, August 24.
Agenda
A detailed agenda is in development. Sign up for our newsletter to be notified as new details are posted.
Friday, Sept. 18
4:00 - 5:00PM - Meet & connect - gather with fellow patients and loved ones
5:00 - 7:00PM - Welcome reception - mix and mingle with researchers and clinicians
7:00 - 9:00PM - Uncommon Awards dinner - dine and celebrate with recognized members of our community
Saturday, Sept. 19
8:30 - 5:00PM - Conference in session! Meals and refreshments provided
Welcome Session: Fireside chat and community Q&A
Join an informal conversation with research and clinical leaders about what’s exciting, what’s emerging, and the questions on the minds of our community.
Featuring Josh Sommer, Chordoma Foundation; Matei Banu, MD, Stanford Medicine; Gregory Cote, MD, PhD, Massachusetts General Hospital; Vinai Gondi, MD, Northwestern Medicine; Catalina Lee-Chang, PhD, Northwestern University; and Joseph Schwab, MD, Cedars-Sinai Medical Center
Session I: Understanding chordoma research and the path to better treatments
Hear the latest research results, learn how chordoma discoveries move from the lab to new treatment possibilities, and find out how patients help shape that progress.
Featuring Gregory Cote, MD, PhD, Massachusetts General Hospital; Daniel Freed, PhD, Chordoma Foundation; Pam Loeb, Edge Research; and Shannon Lozinsky, Chordoma Foundation
Session II: Updates in chordoma care and treatment guidelines
Leading clinicians will share updates on chordoma care, treatment options, and international guidelines. You’ll come away with a better understanding of current best practices and care pathways and the evolution to improve outcomes.
Featuring Lisa Ruppert, MD, Memorial Sloan Kettering Cancer Center; Silvia Stacchiotti, MD, Istituto Nazionale dei Tumori, Milan, Italy; and Mary Frances Wedekind, DO, National Institutes of Health
Session III: Mobilizing the community
Hear first-hand stories of navigating this disease and ideas for how patients and loved ones can make a difference: through peer support, volunteering, fundraising, and storytelling.
Featuring Kenny Brighton, Chordoma Foundation; David Ly, chordoma survivor and CF Ambassador and Peer Guide; Steven Mandel, chordoma survivor and Chordoma Foundation Board Member; Dani Pike, chordoma survivor, Chordoma Foundation; and Gary Trauner, chordoma survivor and CF Peer Guide
Sunday, Sept. 20
9:00 - 12:00PM - Conference in session! Breakfast and refreshments provided
This hands-on workshop invites conference participants to use creativity as a way to reflect, express themselves, and connect with their experiences in a supportive setting. After a brief introduction to expressive arts therapy, participants will be guided through a simple creative process focused on hope, healing, and connection. No art experience is needed.
Community activity - Giving back through words of wisdom and encouragement
This meaningful community art project invites participants to share short messages of encouragement, wisdom, and support for others facing chordoma. These reflections will be woven into collaborative art pieces and mailed to newly diagnosed patients and loved ones. Each piece will carry messages of reassurance, understanding, and hope — a reminder that they are not alone.
Questions?
Contact us at events@chordoma.org.
Registration
Join patients, caregivers, and loved ones from around the world for a meaningful weekend focused on research updates, care, survivorship, and connection. Come learn, share your experiences, and build lasting relationships within the chordoma community.
Registration closes on Monday, August 24.
Travel and lodging
September is one of the best times to visit Boston, with comfortable weather and the first signs of fall. The hotel and venue are situated in a lively, walkable neighborhood.
Thank you to our sponsors!
We're deeply grateful to our sponsors for their generous support of the 2026 International Chordoma Community Conference—and their commitment to improving care and outcomes for chordoma patients.
Alliance sponsor
Acceleration sponsor
Champion sponsors
Advocate sponsor
Sponsorship Opportunities
Sponsorship is a great way to connect with researchers, clinicians, and patients in the chordoma community while showcasing your organization’s commitment to progress against this disease.
Explore available sponsorship levels and benefits in our 2026 Sponsorship Prospectus.
For questions or more information, email Ashley White at ashley@chordoma.org.