Join the New England/MA Ehlers-Danlos Initiatives Facebook Group
The EDS New England/Massachusetts Support Group, members of the EDS Awareness support group network, have created a new Facebook Group and released a new survey. Results from both the New England survey and the EDS Awareness survey survey will be included in upcoming reports.
Thank you for your participation in these important projects,
EDS Awareness staff
Diana Cleaveland and Jon Rodis, Co-Leaders
The purpose of this group is to bring the world of Ehlers-Danlos Voices together, as we live, love, laugh and suffer with a Syndrome whose nature is very complex and poorly understood. Here we can share our initiatives, projects, surveys and more, with the goal of encouraging the raising of unity and Awareness, so that the world will begin to take Ehlers-Danlos seriously, and so that knowledge will help us receive better treatment, along with kindness, concern, and the respect and the help we need and deserve.
One of the initiatives on this site involves an Ehlers-Danlos/CTD survey. Please feel free to fill it out; it is completely anonymous and confidential; feel free also to share it everywhere. If you have created surveys, ideas, polls and projects, feel free to share them here, as we will also share, with your permission, with other groups/organizations. The more we build projects and surveys etc., the more likely we will attract the interest of professionals who would be willing to learn about Ehlers-Danlos, or to do a research project based on a survey or initiative.
Above is a link to our new survey. Just click on the link to read the description; it takes between 30 and 45 minutes to complete. It is completely anonymous; we hope that the confidential results will help build awareness about patient care, some of the more difficult aspects of living with CTDs/EDS, and comorbidities that are very common with EDS, but are not yet included in the Nosology.
Thanks so much!
EDS New England/Massachusetts Support Group