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About us

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Our Vision

Our vision is a better Louisiana where Ehlers-Danlos syndromes and related conditions are fully understood, treated, and supported.

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Our Mission

The mission of EDS Louisiana, Inc is to provide support and resources to Louisiana patients and medical professionals about Ehlers-Danlos syndromes and related conditions via awareness and education.


Passion Led Us Here

Our History

EDS Louisiana, Inc. was established in August 2019.  After an extraordinary fight for her life, our founder learned that public awareness, support and resources regarding the genetic connective tissues conditions, Ehlers-Danlos syndromes, were scarce for medical professionals and patients. They realized that while getting such a serious diagnosis can be scary, having others who understand and share similar experiences can be very validating and comforting. Support groups began assembling throughout the state. Care packages began being sent out to those appearing to have very little hope, needing encouragement, and needing to be reassured they aren't alone. Plenty of educational materials began being circulating throughout the state, in hope of reaching physicians, nurses and other medical personnel.      

Our Board of Directors

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Gilbert Torres, April Torres,  Angelle Painter,  & John Ferman
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