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 1,900 members in 78 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 support group... we are all in this together!
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.
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, and Dutch from this link. It's an outstanding resource for anyone who is newly diagnosed! This booklet is a step-2 read for patients and family members.
Documents, useful links, and Chordoma Expert videos
The Chordoma Foundation
Group members, chordoma experts and organizations 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 much of it grim and outdated.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 those affected by chordoma while leading the search for a cure. Learning more about chordoma is step-3, do visit the CF to learn about treatment options, find chordoma expert doctors in your state/country, about the CFs no-fee services, research, clinical trials, FAQs, and much more. Another valuable resource for patients, the Chordoma Expert Video series bulleted below.
Chordoma is typically very slow growing: organizations and experts recommend that you do not rush in to treatment, that you do your homework, and seek a multidisciplinary team that treats this rare disease routinely. It's 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... step-1