Diagnosed with Chordoma? We Can Help!

 

Support Groups By Country

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!

One in a million

International Facebook Group information, and links

If you or a family member has been diagnosed with chordoma, we're here to help!! This site was created by chordoma survivors to help newly diagnosed chordoma patients through the initial organization of planning your treatment, a guide to resources available to you, with options to consider. This is for people impacted with chordoma, by people who have been impacted. We are all in this together! 

A Private Online Support Community

  • Expert video series by chordoma experts, for chordoma patients here​​​
  • Questions to ask physicians: created by chordoma patients here
  • CF Doctor Directory is here, and CF Patient Navigation Services here
  • Pediatric chordoma (& young adults): expert discussion at this link, a paper here
  • Brief videos: An Uncommon Cause here,  and several 'Uncommon' stories here
  • Josh Sommers  the CF founder, and Sharon's video stories here, lower right 
  • Pinned post  group guidelines and links in the Facebook space is here, request group access here


Chordoma is typically 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 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?!  Begin, by not rushing in to treatment! A brief video by chordoma experts explaining why at this link

Overview

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. 

​We certainly understand feeling confused, afraid, even lost at first. Not only was there a diagnosis of cancer, but a very rare cancer! Take deep breaths, try not to get overwhelmed. Group members recommend that you stay off Google! Again, chordoma tumors are typically very slow growing, often discovered because of another trigger or symptom that warranted an MRI. As mentioned don't rush treatment and do your homework by watching the expert videos and connect with Shannon and Megan at the CF!  

The Support/Survivor Community

The Chordoma Foundation (CF) 

Pictured are the two group moderators Sharon Berlan and Chris Jones. Sharon lives in New York City, diagnosed with clival chordoma in 2004. Chris's daughter Madison now 21, was diagnosed in 2013 with cervical chordoma: they live in Simi Valley California. To request admittance to the support/survivors group (unaffiliated with the CF), please email help@chordomasupport.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)


About the group

  • ​​​The CF has two Patient Navigators, Shannon and Megan who are highly experienced expert guides assisting patients and family members through what may feel like a maze. These services are free and available globally to patients and family members at this link. Completing a simple form alerts them to your request, and you'll receive a response from Shannon or Megan within a business day or two... it really is that simple, no strings attached!
  • 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 newly diagnosed. ​​

Please note while there are Chordoma Foundation volunteers in several Facebook communities, these are private support groups and are not affiliated with the Foundation.

Their mission is to improve the lives of those affected by chordoma while leading the search for a cure. ​ 

Once you have emailed Sharon and Chris at help@chordomasupport.org briefly outlining your request, please go to private Facebook Chordoma Survivors site and press the green “Join Group” button here. We will admit and welcome you, then encourage you to post where you live and what brings you to the group. Since the group is hosted in a private Facebook space, only members can see posts within the group so don't be shy... there are no silly questions!

Chordoma Support Groups, Documents, and other useful links

 Updated 7-April-2017

​Group members 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 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.