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Welcome to Ehlers-Danlos Initiatives, Surveys and Unified Voices: The World Speaks!
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, as 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.
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