If you or a family member has been diagnosed with chordoma, we're here to help!! While it's hosted in a private FaceBook space, this is not a social media site: we're a global support community with over 2,000 members in 81 countries, created by chordoma survivors and caregiver/family members to help guide newly diagnosed to the Chordoma Foundation through the initial organization of choosing chordoma experts and why, and to help you learn from others who have already been down the many paths of this journey.
Note: Your Facebook friends may see you are in the private chordoma group, but cannot see anything posted within
The group hosts/moderators are Sharon Berlan and Chris Jones. Sharon was diagnosed in 2004 with
clival chordoma and lives in New York City. Her story in a brief video at this link.
Living in Simi Valley CA, Chris's teenage daughter was diagnosed with cervical chordoma in 2013
A Private Online Support Community
Traveling for Treatment?
Group members all understand feeling confused, afraid, even completely lost and numb at first. Not only was there a diagnosis of cancer, but a very rare cancer. Try not to overwhelm yourself, take each step one-by-one, the first of which is gaining knowledge from the Chordoma Foundation (CF) about this rare disease so you can make informed decisions. Chordoma expert physicians, organizations and our group members recommend that you don't rush treatment and do your homework, watch the Foundations expert-answers videos, and connect with the Patient Navigators by clicking this link.
Note there are CF volunteers who may be active members in separate support groups, these groups are private and not affiliated with the Foundation. While this page and the moderators have .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.
Chordoma Support Group Documents and Other Links
Chordoma Support Groups By Country
One in a million
To request admittance to the support/survivors group (unaffiliated with the CF), please email us at firstname.lastname@example.org and very briefly outline how chordoma impacts you or a friend/family member, and what city/country you live in. (Unfortunately we need to qualify requests to prevent access to spammers and help maintain member privacy). Once you have emailed the us and briefly explained your situation, please go to the private Facebook Chordoma Support and Survivors site here, and press the “Join” button. There will be a pop-up asking questions: If you didn't email us, we ask that you answer the pop-up questions or we cannot admit you: again, our quest is to preserve our members privacy and keep spammers out.