The Chordoma Foundation (CF)
Note there are CF volunteers who may be active members in various separate support groups. Chordomasupport.org is a private and separate support community, not affiliated with the Foundation.
Their mission is to improve the lives of those affected by chordoma while leading the search for a cure.
The Chordoma Foundation has two Patient Navigators, Shannon Lozinsky and Chase Hinnant: they are globally recognized chordoma patient navigators assisting patients and family members to help navigate through what may feel like a confusing maze. These confidential services are free and available globally to patients and family members at this link. Completing a simple form alerts them to your request, and you'll receive a response from Shannon or Chase within 1-2 business days. The CF hosts non-Facebook online support groups, more here.
If you or someone you care about is dealing with chordoma, you can learn about diagnosis, find expert doctors, treatment options, clinical trials, no-fee patient navigation services, chordoma conferences and more. There are FAQs, excellent 'Expert Answers' videos, a glossary... and if you're facing surgery, how to coordinate getting some tumor tissue to the CF's Biobank. Given chordoma tissue is as rare as moon dust, it's imperative that the CF has tissue available for researchers globally.