Cairns Ehlers Danlos Support Group provides both Facebook and face-to-face contact for EDSers, generally in the Far North Queensland area around and including Cairns.
Its public Facebook page is for awareness, while a closed Facebook group is for frank and open discussions. Facebook group membership includes EDSers in the Cairns area as well as in other regions, typically because they have not discovered fellow EDSers in their own areas and would like to affiliate with a group broadly in their region.
Facebook Messenger hosts a social chat group for those who wish to participate. We ask, however, that EDS issues be discussed on the Facebook page so they are more easily searchable.
Local group members meet periodically, usually at a member’s home. Trinity Beach and Kuranda members have opened their homes to group meetings to date. As is common among EDSers, it is often difficult for members to attend face-to-face gatherings because of the many and varied symptoms we all experience, but we do try!
For new members: if you do not use Facebook and are familiar with Google groups — and you’re happy to coordinate with our Facebook group manager to share common messages — we would appreciate your help to connect with EDSers who do not want to use Facebook.
Either way — whether you’re a Facebook user or not — we ask that you speak up if you’re able to host a face-to-face gathering. And please know that we’d all love to meet you, and we will, when we can. Contact Carla Berry for more information at firstname.lastname@example.org.
The Melbourne EDS Support Group has been formed to provide information, support, compassion, and understanding to people with the Ehlers-Danlos syndromes and their families.
It is vitally important for EDSers to be able to connect with others who understand and it’s especially lovely to meet others face-to-face, as many feel isolated. We also feel it is vitally important to work at a National level to improve education of doctors, schools, employers, and politicians about EDS and to improve support services for EDSers.
Contact Sherri Marshall for information on meeting times and locations at email@example.com.
To add your EDS support group or charity, please complete the Support Group Listing Request form. To become an affiliate of the Society, please visit the Global Affiliation Program page.