Edsers United

Rating: 4.86 stars   7 reviews

Issues:

Location: 10 Schalks Crossing Rd. Suite 501-283 Plainsboro NJ 08536 USA

Mission: At EDSers United, our mission is to generate international awareness, education, and support for Ehlers-Danlos Syndrome by providing resources, databases of information, inspiration, and counseling. In addition, we promote local community networks that encourage awareness, support, sharing of information, and self-preservation globally. We represent and advocate on behalf of individuals afflicted with Ehlers-Danlos Syndrome (EDS), and other related connective tissue disorders world-wide working to establish a future where a cure for EDS exists. By joining our voices, we create a powerful force for recognition, encouraging awareness. We strive to educate the world about Ehlers-Danlos Syndrome patient's need for treatment options and an eventual cure.
Results: We have spent a lot of time this past year assisting local awareness efforts throughout the United States in addition to developing a Research Library for health care professionals to reference for treatment purposes.
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EIN 45-2918197
201-702-4075
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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.

Will you volunteer or donate to this organization?

Definitely

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

A lot

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

I attended a bake sale held by EDSers United this past summer where I was able to meet the founder of the organization, Nadia Bodkin. She was one of the most kind and dedicated people I have ever met in my life. My daughter, age 15, had been dealing with many of the symptoms described in EDSers United's pamphlets for years without much explanation. We took some literature off of the site and brought it to her doctor who said "hmm sounds like something we should be looking into." Without further delay we went to a geneticist at Hackensack University Medical Center and low and behold there it was. Her official diagnosis and answers to all of the questions that has been plaguing us since she was a little girl. I thank God ever day my husband's love for baked goods or we may never have come across this condition haha. I will forever be indebted to the church and EDSers United and plan on volunteering at their next event. My daughter and I have a new found closeness thanks to you. Thank you a thousand times Nadia and EDSers United.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

 
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Role: General Member of the Public
Rating: 5 stars  

I've observed how one young woman, who is herself inflicted with Ehlers-Danlos syndrome, has taken this nonprofit from the ground up to potentially raising worldwide awareness of this previously misunderstood condition. EDSers United not only serves to network those dealing with EDS themselves, but also family, friends and partners who care about them.

EDS United has also brought to light how patients and their loved ones deal with health issues related to other connective tissue disorders. My wife suffers from three of these; the honest insight and encouragement from this organization has been very enabling for her – and also myself as her supportive life partner.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

 
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