USA: Chordoma Foundation

Contact Information

Chordoma Foundation  
PO Box 2127
Durham, NC 27702-2127



Contact Person

Josh Sommer (Excecutive Director)

Hans Keulen (European liaison)

Organisation Profile

About Chordoma
Chordoma is a relentless and difficult to treat bone cancer that occurs in the head and spine in people of all ages. No drugs are approved to treat chordoma and the average survival after diagnosis is 7 years; a statistic we are determined to improve.

About the Chordoma Foundation
The Chordoma Foundation is an international nonprofit organization working to improve the lives of chordoma patients by accelerating the development of effective treatments, and by helping patients to get the best care possible. Guided by a comprehensive research roadmap, the Foundation initiates and funds research, facilitates information exchange and collaboration among researchers, and provides scientific resources needed for research.

Our Approach

  • Fund results-oriented research
    We proactively fund research projects identified by our Scientific Advisory Board as strategic priorities for advancing the development of new treatments for chordoma.
  • Provide scientific resources
    We create, collect, store, and distribute the information and biological materials that researchers need in order to study chordoma and develop new treatments.
  • Facilitate communication and collaboration
    We connect physicians, scientists and companies from across the world to share information and collaborate on projects they can only achieve together.
  • Guide patients to obtain quality care
    We provide accurate information about treatment options and clinical trials, refer patients to experienced doctors, and match patients with trained peer-support mentors.

Highlighted Initiatives


The Chordoma Genome Project is a collaborative endeavor involving researchers at the University College London, the US National Human Genome Research Institute, and the Wellcome Trust Sanger Institute, which is using the latest DNA sequencing technologies to systematically uncover all of the genomic changes that drive chordoma. Results will vastly enhance our understanding of chordoma and could provide a rational starting point for developing targeted therapies.

Cell Lines and Animal Models
The Chordoma Foundation has funded researchers at Harvard, Duke, Johns Hopkins, the University of Florida, the National Cancer Institute of Italy, and the University College London to develop new cell lines and animal models. To incentivize other labs to develop these crucial resources, the Foundation is also offering a $10,000 prize for each new cell line or animal model developed. Additionally, the Foundation maintains a repository of validated chordoma cell lines, and makes them freely available to researchers and drug companies around the world, enabling research that would not otherwise be possible.

Drug Screening
Researchers at the NIH Chemical Genomics Center (NCGC) have tested all 2,800 FDA approved drugs against two chordoma cell lines, and, from this screening, a number of active compounds have been identified. The Chordoma Foundation is working with researchers at NCGC and Duke University to further investigate these hits, and to test the most promising of these compounds in animal models in order to provide rationale for human clinical trials.

Research Workshops
The Foundation’s International Chordoma Research Workshops bring together a diverse group of physicians and scientists from around the world to share the latest discoveries about chordoma, to discuss new ideas, and to forge collaborations with colleagues from different disciplines and institutions. Hosted in Bethesda, MD in partnership with the NIH, these research workshops have connected well over 100 researchers, and have solidified the interest of many investigators new to chordoma research.

Online Research Portal
The Chordoma Foundation has developed a rich collection of online resources to help chordoma researchers find the information, resources, and collaborators they need to succeed. The Online Research Portal includes the Chordoma Research Wiki, which contains all published discoveries about the molecular biology of chordoma; a researcher directory with detailed information about over 170 researchers studying chordoma; and a list of all available chordoma-related biospecimens and data.

“Patient groups like the Chordoma Foundation are one of the forces pushing academics and drug companies to start sharing more data in the hopes of speeding up medical innovation.” – Forbes, June 2, 2010

“The Chordoma Foundation, which supports research into that rare cancer… jump-start[ed] studies that otherwise would never have been done.” – Newsweek, May 15, 2010

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