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Review for EDS TODAY ~ Ehlers-Danlos Advocates , Mays Landing, NJ, USA

Rating: 5 stars  

My son has EDS. There is not a lot of information and support available on the web. It is an under diagnosed crippling disorder. EDS TODAY provide research information, awareness, advocacy and education. Not only that they are here for us. Having an invisible illness is a very isolating condition to have. Having people to talk to that understand is vital. I am grateful for the support, understanding and education that EDS TODAY provided to me and my family and many people I know that have needed support.

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

I would love to see it grow and raise more awareness about a condition that can be life threatening. Vital education is needed providing awareness of signs and symptoms that can potentially save a life.

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Role:  General Member of the Public