Once you have emailed Sharon and Chris at firstname.lastname@example.org briefly explaining how you or a friend/family member is impacted by chordoma, please go to private Facebook Chordoma Survivors site and press the green “Join Group” button here. We will admit and welcome you, and encourage you to post where you live and what brings you to the group. Since the group is private, only members can see posts within the group so don't be shy... there are no silly questions!
Please note while there are Chordoma Foundation volunteers in several Facebook communities, these are private support groups and is not affiliated with the Foundation.
The information and communications in the Support Groups is solely for informational purposes and they are not intended to provide medical advise. 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.
If you or a family member has been diagnosed with chordoma, we recommend that you research at the Chordoma Foundation (CF). There is a lot of obsolete information on the web, much of it grim and outdated.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.
So where do you start? There is an excellent booklet titled "Expert Recommendations for the Diagnosis and Treatment of Chordoma" downloadable in English, Chinese (Mandrin), Italian, Spanish, and Dutch from this link. This booklet is a step-1 read for newly diagnosed.
Chordoma is typically very slow growing, and experts recommend that you do not rush in to treatment, that you do your homework, and seek a multidisciplinary team that treats this disease routinely. A brief video by chordoma experts explaining why at this link.
To request admittance to the support/survivors group (unaffiliated with the CF), please email email@example.com 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 to help maintain members privacy). Pictured are the group moderators Sharon Berlan and Chris Jones. Sharon lives in New York City, diagnosed with clival chordoma in 2004. Chris' daughter Madison now 21, was diagnosed in 2013 with cervical chordoma: they live in Simi Valley California.
International Facebook Group questions, answers, and other helpful links
A Private 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.
FaceBook Support Groups By Country
Chordoma Support Groups, Documents, and Links
We certainly understand perhaps feeling confused, afraid, even lost at first. Not only was there a diagnosis of cancer, but a very rare cancer! Chordoma tumors are typically very slow growing, often discovered because another trigger or symptom that warranted an MRI. Again, don't rush and do watch the video about doing your homework at this link.
All one in a million...
We are an global online community in a private Facebook space where only group members can see posts within the group, and they won't be on your Facebook "wall".
This amazing group has over 1,700 members 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 feel much less alone in our global online village... we are all in this together!