Chordoma is most often very slow growing: while your first instinct may be to 'get this cancer out of me', patient survivors and experts recommend that you do not rush in to treatment unless it's suggested by multiple chordoma experts, that you do your homework, and seek a multidisciplinary team that treats this rare disease routinely. Chordoma is not a cookie-cutter cancer and as such, the treatment approach must be defined by recognized chordoma experts. So where do you start?!  A brief video by chordoma experts explaining that at this link

Getting Started

Note there are CF volunteers who may be active members in separate support groups, the group is private and not affiliated with the Foundation. While this page and the moderators have a .org addresses, we do not request or accept donations since we are not a tax exempt organization. The information and communications in the Support Groups is solely for informational purposes and they are not intended to provide medical advice. None of the founders, moderators, administrators, or other members of the groups take responsibility for any possible consequences from any treatment, procedure, exercise, dietary modification, action or application of medication which results from reading or following posts within the group. The posting of comments does not constitute the practice of medicine, and any information shared does not replace the advice of your physician or other health care provider. Before undertaking any course of treatment, the reader must seek the advice of their physician or other health care provider.

There is an excellent booklet titled "Expert Recommendations for the Diagnosis and Treatment of Chordoma" downloadable in English, Chinese (Mandarin), Italian, Spanish, Japaneses, and Dutch from this link. It's an outstanding resource for anyone who is newly diagnosed! This booklet is a must-read for patients and family members. ​Additional links to current information about chordoma are noted with bullets below. More information about our private support group here.

Group Documents, Links, and General Information

Diagnosed with Chordoma? We Can Help!


Get Peer Support Here

The Chordoma Foundation

Our support group members and chordoma experts recommend that you research at the Chordoma Foundation (CF) site. There is a lot of obsolete information on the internet... much of it grim and outdated. ​The CF's website is updated regularly: their mission is to improve the lives of us affected by chordoma while leading the search for a cure. Visit the CF to learn about treatment options, find chordoma expert doctors in your state/country, about their no-fee services, research, clinical trials, FAQs, and much more. 

This website has been created to help guide newly diagnosed chordoma patients through the initial organization of your treatment, a guide to resources available to you, and options to consider. This page was created by chordoma survivors in a global online support community.

We are an global online community where only group members can see posts within the group... click here for details. This amazing group has over 2,200 members in over 80 countries with vast amounts of wisdom, experiences, and compassion.

If you feel alone, isolated... like nobody could possibly understand what you're going through, you may far less alone in our global online private support group... we are all in this together! 

  • Frequently asked questions here. Are you newly diagnosed,  start here
  • Expert-answers video series by chordoma expert physicians here​​​
  • Questions to ask physicians for newly diagnosed  here
  • Questions to ask physicians for recurrent or advanced metastatic disease
  • Advice for patients and caregivers from patients and caregivers here
  • Educational Materials, including the Expert Recommendations concensus and recurrence booklets here
  • 2018 NCCN Guidelines (National Comprehensive Cancer Network)  here  
  • Doctor Directory is here, and Chordoma Foundation (CF) Patient Navigation Services here
  • Pediatric chordoma (includes young adults): an expert-answers video discussion at this link, an article here
  • Clinical trials specific to chordoma here, and Therapeutic Target information here
  • CF online support community at Chordoma Connections (separate from the group on Facebook)
  • Helpful Resources - emotional support, financial resources, housing and travel assistance here
  • International Chordoma Research Workshop​ - Top 10 Takeaways from the 6th Medical Conference, link here
  • Highlights from 2018 International Chordoma  Community Conference here
  • Follow the CF on Facebook to read about progress being made here, and on the CFs website here