Community Guidelines
Chordoma Connections is a place for chordoma patients, caregivers, and their loved ones to support, share, learn, and connect.


The purpose of Chordoma Connections is to be a safe, inclusive space where chordoma patients and loved ones around the world can connect with each other and with the Chordoma Foundation. Our community comes together in this space to get support, give support, share experiences and information, stay up to date on chordoma research progress, learn about fundraisers and community conferences, and much more.

What are some ways to participate in Chordoma Connect?
  • Personalize your profile with pictures and information about yourself.
  • Search for other members you’d like to connect with and add them as a friend.
  • Ask questions. Answer questions from others.
  • Ask for support from those who understand. Give support to others who need it.
  • Read and comment on the resources and content posted in the community. Your feedback helps make them better.
  • If you recognize that another member is in need of more personalized assistance or information, please direct them to a CF Patient Navigator.
  • Share your knowledge or lessons learned that can bring value to others. We all learn more together.
What are the Chordoma Connect guidelines?
  • Do not attempt to give medical advice at any time, or pass judgment on decisions others have made or are contemplating. Respect the choices of other members.
  • You must be over the age of 18 years old or have the permission of a parent or guardian to use Chordoma Connections. Children under the age of 13 years old may not use Chordoma Connections.
  • Respect the privacy of all group members by not discussing personal information from within the group to non-members.
  • Refrain from posting personal reviews of medical professionals, positive or negative. The CF Doctor Directory is a valuable resource for finding chordoma-experienced doctors and those searching for a doctor can be directed there. If information is posted on a doctor who has chordoma experience but is not currently listed in the Directory, please tag a CF staff member so the doctor can be contacted about being included.
  • Be encouraging and appropriate. Respect people as individuals by keeping your tone positive and your comments constructive. As a worldwide community, there are many different ethnicities, cultures, religions, and beliefs represented here, and all should be respected.
  • Do not post content that is dangerous or inappropriate, and use best judgment when posting graphic medical pictures or medical descriptions.
  • It is not permitted to solicit or advertise in the community for personal fundraising purposes. This includes any personal fundraisers, whether personal requests or through sites like GoFundMe, JustGiving, etc. These posts will be removed.
  • It is permitted to promote Chordoma Champions pages and community fundraisers that benefit the Chordoma Foundation.
  • If you need to vent, please refrain from including identifying information about any individual.
  • Share, share, share. We will do our part to provide valuable content. However, you have great connections, information, and resources as well. The more content that is shared, the more valuable a resource this community becomes!
We welcome your feedback and ideas
We want this to be the best community it can possibly be. Let us know what you think and how we can help improve your experience within Chordoma Connections. Please contact us at with any suggestions, issues, or concerns.
Flag inappropriate content and behavior
This community is made up of members who came to support each other. However, there may still be instances of inappropriate conduct within the community. If you recognize any violation of these guidelines, please notify us within the community by choosing "Report As Inappropriate" and let us know why you feel the content is inappropriate.
Any posts that fail to meet the guidelines outlined above are subject to removal. Any posts that are deleted by moderators will be discussed with the poster. Continued failure to comply with the guidelines may result in being removed from the community.

We hope you enjoy the Chordoma Connections community and take full advantage of all it has to offer. We look forward to participating with you!
Online Community Terms of Use
Your use of Chordoma Connections is also subject to the Chordoma Foundation’s Terms of Use and Privacy Policy.

Community Guidelines effective date: 11/28/2017
Community Guidelines last updated: 11/28/2017