Since 2007, the Chordoma Foundation has been the only organization in the world dedicated to finding a cure for chordoma, a rare cancer that affects the neck and spine of people of all ages. The Foundation’s website has become the world’s leading source of information about chordoma for patients, families, researchers and physicians. To better serve all of these constituents, the Chordoma Foundation is pleased to announce the launch of a newly designed website at chordomafoundation.org.
“For rare diseases like chordoma, vital information is often hard to come by,” says Josh Sommer, Co-Founder and Executive Director of the Chordoma Foundation and a chordoma survivor. “Our new website will empower patients to more effectively navigate treatment, doctors to better manage their chordoma patients, and researchers to more easily study the disease.”
A new section for patients and families includes easy-to-understand information about chordoma and treatment options, a doctor database, an up-to-date list of open clinical trials, opportunities to participate in research, and a vast list of helpful resources.
“A patient’s initial treatment can have a major impact on their outcome and quality of life” says Sommer. “It is, therefore, critical to our mission that any newly diagnosed patient visiting our website come away with the information they need to get the best care possible.”
For scientists and physicians, the site features tools to facilitate collaboration and information sharing. A Researcher Directory lists over 150 colleagues and potential collaborators across the world, and a resource repository catalogues all publically available chordoma cell lines, animal models and datasets.
Chordoma (chordoma.org / chordomafoundation.org) is a relentless and difficult to treat bone cancer that occurs in the head and spine in people of all ages. Since its inception in 2007, the Chordoma Foundation has systematically funded and facilitated research to develop new treatments, and ultimately a cure, for chordoma. More information on chordoma, the Foundation, and opportunities to contribute to this important research can be found online.