Chordoma Foundation

2018 International Chordoma Community Conference

March 23–24, 2018  •  Boston Marriott Cambridge Hotel



About the conference

Our International Chordoma Community Conferences (ICCC) educate patients and caregivers about the latest advances in chordoma treatment and research and teach strategies for managing the effects of the disease. Since 2008 we have hosted multi-day, biennial conferences, bringing together hundreds of people from around the world to face the unique challenges of chordoma together.

2018 program

The 2018 International Chordoma Community Conference was held at the Boston Marriott Cambridge Hotel. On the afternoon of Friday, March 23 we held our opening session, where patients and caregivers had the opportunity to break into small groups and meet others whose experiences with chordoma are similar. The opening session was followed by a reception and awards dinner with doctors and researchers who treat and study chordoma.

Saturday, March 24 was a full day of programming. Participants had unique opportunities to learn from members of the Foundation’s Medical and Scientific Advisory Boards and ask questions about the latest treatment options and research. The conference focused on an array of topics including:

  • immunotherapy and targeted drug therapy
  • clinical trials
  • emotional and peer support
  • dealing with a recurrence
  • survivorship planning
  • pain management
  • the Foundation’s role in driving chordoma research
  • community fundraising

Conference materials

Speaker presentations

Welcome and announcements
Shannon Lozinsky ~ Chordoma Foundation
Recommendations for treating recurrent and advanced chordoma
Chris Heery ~ Bavarian Nordic
Bill Dorland ~ chordoma patient
View Slides
Memorial Tribute
Maureen LaForge and Kris Stahl
Survivorship sessions I: Dealing with pain and side-effects
Lisa Ruppert, MD ~ Memorial Sloan Kettering Cancer Center
View slides
Accelerating the search for a cure
Josh Sommer ~ Chordoma Foundation
Joan Levy ~ Chordoma Foundation
Survivorship sessions I: Navigating the healthcare system 
Al Ferreria, RN ~ University of California, Los Angeles
View slides
Ask the experts panel
Moderator: Ed Les, MD
Paul Gardner, MD ~ University of Pittsburgh Medical Center Adrienne Flanagan, MD, PhD ~ University College London
Ziya Gokaslan, MD ~ Brown University Yen-Lin Chen, MD ~ Massachusetts General Hospital
Chris Heery, MD ~ Bavarian Nordic Thomas DeLaney, MD ~ Massachusetts General Hospital
Shreyaskumar Patel, MD ~ The University of Texas MD Anderson Cancer Center

Ed Les, MD ~ Chordoma community member

Organizing committee

  • Sharon Berlan
  • Nadine Cordova
  • Susan Garbett
  • Norma Jones
  • Maureen LaForge
  • Adriane Rothstein
  • Kris Stahl
  • Tim Zellers

Watch the live stream

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Watch this video on YouTube »


Thank you to the 2018 ICCC sponsors

2018 ICRW sponsor - MGH Harris Center

Northwestern University Feinberg School of Medicine

Penn Radiation Oncology

UCLA Department of Orthopaedic Surgery

UPMC Center for Skull Base Surgery

University of Florida Proton Therapy Institute

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