My Nonprofit Reviews
Review for EDS TODAY ~ Ehlers-Danlos Advocates , Mays Landing, NJ, USA
My son was recently diagnosed with a type of EDS. EDS Today is a great site to educate patients and the general public on what the disease entails, offers treatment methods, and also raises money for researching treatments and cures of EDS. The board members have been touched by this disease and have made it their mission to help educate others so that lives will not be lost so early.
The website is very easy to navigate, offers easy to understand information, hot links to additional EDS sites, videos, contact info for all EDS organizations worldwide and so much more. It is the central hub. This site is to EDS patients as google is to the common person...a great place to search for whatever you seek.
If I had to make changes to this organization, I would...
Maybe add a section talking about the misconceptions people have of EDS, like how CPS is sometimes called due to the bruising, how docs don't think people are not numb (due to absorption issues) and so they go through procedures in pain, etc)
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