Chordoma
Synonyms: Notochordal sarcoma
Chordomas are rare malignant tumors arising from embryonic remnants of the notochord in axial skeleton.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Reference: Access aggregated data from Orphanet at Orphadata.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version September 2023.
Newly diagnosed with
Chordoma?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
Chordoma Foundation
The Chordoma Foundation works to improve the lives of those affected by chordoma and lead the search for a cure. Founded in 2007 by a small group of survivors and family members, we pursue three core goals: Better treatments, Better care, and a better experience for those navigating chordoma.
Neuroendocrine Cancer Awareness Network Inc
The Neuroendocrine Cancer Awareness Network (NCAN) is a non-profit organization dedicated to raising awareness of Neuroendocrine Cancer, providing support for caregivers and people with NETs, and funding for NET cancer research. Since 2003, it has been our mission, or as we like to say, our passion, to educate and support the NET community as a whole. That’s our thing.
My Faulty Gene
My Faulty Gene is a nonprofit organization which provides information and assistance to any individual whose family medical history suggests genetic testing might be helpful in identifying an increased risk of disease due to a genetic mutation. We believe that everyone in need of genetic testing should have access to it.
My Little Sunshine Foundation
My Little Sunshine is a non-profit foundation dedicated to educating people about the importance of fertility preservation and making fertility resources accessible to all.
SALUS
Educate and provide resources to POC with Rare Cancers
Help Hope Live
Help Hope Live assists individuals living with catastrophic injuries and illnesses to fundraise toward their medical expenses and related costs.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
Clinical Trials
For a list of clinical trials in this disease area, please click here.