Newly diagnosed with chordoma?! We can help...
If you or a family member has been diagnosed we recommend that you do your research at the Chordoma Foundation (CF) site. The CF's mission is to improve the lives of those affected by chordoma while leading the search for a cure. Since there is a lot of obsolete 'data' and outdated 'statistics' on the web, we suggest that you stay away from consulting with Dr. Google, and do your research at the CF site.
To request admittance to a separate chordoma support and survivor group, please email email@example.com and briefly outline your relationship with chordoma and what city/country you live in. Sharon and Chris (the group moderators) try to qualify all requests to maintain the privacy of our members and avoid spammers. Since the group is private, only members of the group can see posts and updates within the group. There are over 1,600 members with vast amounts of wisdom, experiences, and compassion, so being part of a group of one-in-a-millions we hope you will fell less alone!
Chordoma is typically slow growing and expert physicians recommend that you don’t rush in to treatment suggesting that you do your homework, find chordoma experts... a brief video about that HERE.
There is also an excellent booklet titled "Expert Recommendations for the Diagnosis and Treatment of Chordoma" that you can download from THIS LINK.
While there are Chordoma Foundation volunteers who may be active members in separate support groups, the groups are private and not affiliated with the Foundation.
We're sorry you're here but glad you found us. We are all in this together!
The information and communications in the Support Groups is solely for informational purposes. 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.