Shani Weber

Community and Advocacy Director

Shani Weber is Community and Advocacy Director for The Ehlers-Danlos Society. No longer able to continue her career as a Special Education Teacher due to her hypermobile EDS, she became a volunteer with the Ehlers-Danlos Society in 2012. Shani is the moderator for The Ehlers-Danlos Society’s support community on Inspire ( and assists patients and doctors from around the world who contact the Helpline. She is also a patient advocate for the organization, speaking with national and state government representatives and the medical community about EDS and issues that concern us. Additionally, Shani co-founded and co­-leads the Maryland EDS support group which now has over 350 members. Shani received her Master’s degree in Early Childhood Special Education and in Early Childhood Development from the George Washington University and her Bachelor’s degree in Elementary Education from Old Dominion University. If you wish to contact Shani, please click here.

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