Last Updated: 2 April 2024

Let’s Chat: Virtual Support Groups Code of Conduct  

The Ehlers-Danlos Society is committed to providing an engaging, welcoming, and safe environment for all participants. Accordingly, all Let’s Chat: Virtual Support Group participants are required to abide by the following Code of Conduct. All determinations of appropriate or inappropriate behavior are at The Society’s sole discretion and the decision(s) of The Society’s representatives will be final.   

Our virtual support groups are intended for support and networking. Medical advice will not be given during these groups. Information and resources shared during these groups are not endorsed by The Society. To protect the privacy of participants, virtual support groups and their chats are not recorded, saved, or shared. 

Acceptable and Encouraged Behavior 

  • Engaging respectfully with other participants, differing views or opinions, group hosts or Society staff, and the rules 
  • Using welcoming and inclusive language 
  • Showing empathy towards other participants 
  • Raising your hand (this feature can be found under “reactions” at the bottom of the screen) and waiting to speak until you are called on to ask a question or raise a topic for discussion 
  • Asking one question or raising one topic for discussion at a time 
  • Staying mindful of the amount of time you are speaking to give other participants a chance to speak 
  • Allowing group hosts or Society staff to end the group on time 

Unacceptable Behavior 

  • Engaging in harassing or intimidating behavior, including sustained disruption which prevents other participants from being heard 
  • Trolling, insulting, making derogatory comments, and personal or political attacks  
  • Interrupting other participants, group hosts, or Society staff 
  • Dominating a group 
  • Ignoring instructions from group hosts or Society staff 
  • Recording or sharing the content shared during a group in any way 
  • Engaging in substance use on screen 
  • Condoning or engaging in illegal activity during groups 
  • Other conduct which could reasonably be considered inappropriate in a professional setting 
  • Healthcare professionals are not permitted to give medical advice during these groups

Demographic-Based Groups 

Please do not join our Let’s Chat: Parents, LGBTQIA+, Partners and Spouses, or Men with EDS and HSD groups if you are not part of the demographic intended for the group. 

Parents/guardians may not actively participate in our Let’s Chat: Teens group but are encouraged to supervise their teen’s participation. Parents/guardians may not join the group without their teen.    

Consequences of Unacceptable Behavior 

  • Unacceptable behavior will not be tolerated. 
  • A verbal warning, via a private chat, will be issued to anyone engaging in unacceptable behavior. An individual asked to stop engaging in unacceptable behavior is expected to comply immediately.  
  • If a participant continues to engage in unacceptable behavior, The Society’s representatives reserve the right to take action as they deem appropriate, up to and including removal from the group or multiple groups.   

Reporting an incident:  

  • You can use the chat to privately message the group host or Society staff. Please use this to report individuals who have violated any part of this policy during a virtual support group.  
  • If you would like to report something after a group has finished, please email [email protected] with any concerns. 

How to Contact Us 

If you have any questions about The Society’s Let’s Chat: Virtual Support Groups, their Code of Conduct, or if you would like to discuss your accessibility needs before or after attending a virtual support group, please do not hesitate to contact us. 


Email us at: [email protected] 

Call us at:  +1 248-716-8336 

Or write to us at: The Ehlers-Danlos Society Headquarters, 447 Broadway, 2nd FL #670, New York, NY, 10013, USA or The Ehlers-Danlos Society Europe Office, Office 7, 35-37 Ludgate Hill, London, EC4M 7JN, United Kingdom 

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