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.
Write a Review

See How 3Hrs Can Help

More Info

EIN 45-2918197
201-702-4075
Invite people to share their experience with this nonprofit!

Filter Reviews by Role

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

Rating: 5 stars  

Our son was diagnosed in July with EDS/ hypermobility type 3. This group has been very helpful in getting the information we needed to understand this disease. They work hard in getting this information out there. Trying to raise money for research, with is much needed!!! They are an amazing organization!!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
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

Was this review helpful? 
Rating: 5 stars  

My daughter was born with EDS. She was diagnosed as a child but there wasn't much support back then for this condition. For a while, before EDSers United, I lost hope for any patient support as the organizations that claim to be for EDS really didn't do much for our community. This year, EDSers United's work really touched my family. For the first time in 29 years, my daughter received one on one support counseling for EDS. She found true friends and support in the volunteers at EDSers United. She also received two FREE EDS Awareness Packages via mail from EDSers United which helped us to better explain her condition to family, friends, and her doctors! I cannot thank EDSers United enough for all they have done and continue to do and my family and I will continue to donate to this organization. I can see our donations go directly to the EDS community and I am honored to be a Zebra Sponsor!

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

I would change the shop so that I can input my own dollar amount to be donated. Right now I have to choose from given amounts what I would like to donate. I know I can mail a check for the amount I want to donate but its more convenient to donate online.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

EDSers United has done so much for my family and the EDS Community. I am so grateful to their team and for all of the free awareness materials they sent me to give out to my doctors, family, friends, and community businesses. EDSers United obviously cares about our community and for raising awareness for EDS. I am proud to be called one of their volunteers.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
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

Was this review helpful? 
Rating: 5 stars  

I personally do not have Ehlors-Danlos Syndrome, however my wife does. This organization has done a tremendous job in assisting me with better understanding not only my wife, but what she goes through on a daily basis. Through their resources we were able to educate everyone around us including our doctors. Thank you EDSers United for all of your hard work and dedication.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
profile
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

Was this review helpful?