Chordoma Foundation

Impact

  • Partnered with researchers at Duke University to characterize 6 published chordoma cell lines, leading to a publication showing that only two were valid, and stopping the future use of invalid cell lines.
  • Created the Chordoma Cell Line Repository, a one-stop source of valid cell lines, and distributed 3 valid cell lines to more than 70 labs, including several pharmaceutical companies.
  • Launched the Chordoma Foundation Biobank which enables any chordoma patient to donate their tumor for research, and makes much-needed biospecimens available to researchers.
  • Created a Researcher Directory with more than 150 members to connect the entire chordoma research community and help researchers find collaborators.
  • Raised awareness for this once-ignored disease among physicians, researchers, policy makers, and the public through national media appearances, presentations at international conferences, and visits to more than 25 medical centers across the world.