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Review for EDSers United Foundation, Plainsboro, NJ, USA

Rating: 4 stars  

I am an EDSer living in Costa Rica, a country where caregivers are not properly trained in this condition. What I mean is that MDs have the general knowledge of the types and symptoms, but no more, and physical therapists or nurses don´t and so patients are under served. EDSers United gives people like me an opportunity to know what to expect from the health industry, so I can be an active tool in my treatment.
They have given me hope, showing me that I´m part of a big group of people who can understand life with pain, who share enriching experiences and we can each learn how to care for ourselves, as much as how to help our caregivers.
EDSers united is a place for patients and their immediate group, and everyone benefits from it.

If I had to make changes to this organization, I would...

Create a parallel page in Spanish.

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How much of an impact do you think this organization has?

A lot

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Role:  General Member of the Public