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EDSers United Foundation

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Nonprofit Overview

Causes: Health, Medical Research, Voluntary Health Associations & Medical Disciplines

Mission: Ehlers-Danlos Syndrome (EDS) is classified as a group of rare connective tissue disorders. Unfortunately, there are no treatments or cures currently established for any of the EDS types. This is due in large part to a lack of awareness and funds dedicated to EDS research and development. EDSers United is dedicated to filling this underserved niche within the EDS community. Our organization makes relevant resources, informational databases, and community support programs readily available to the EDS community. We promote local community networks that encourage awareness, support, sharing of information and self-preservation globally. In addition, our organization is focused on advancing research that will lead us to identifying all the types of EDS that are presenting within the community, improved diagnostic tools, and treatment options for Ehlers-Danlos Syndrome. We represent and advocate on behalf of individuals afflicted with EDS, and other related connective tissue disorders world-wide working to establish a future where a cure for all types of EDS exists. By joining our voices, we create a powerful force for recognition, encouraging awareness and research development. EDSers United's services and programs are dependent upon the generosity of our members, donors, sponsors, and volunteers. Donations, contributions, and sponsorships are vital components to building and maintaining EDSers United's networks, programs, research and community projects.

Results: To date, we have established the very first EDS patient registry as a means to accurately determine the prevalence of all the EDS types. Additionally, we have established an effective community outreach program that provides members of the community with the ability to receive one-on-one consultations free of charge with healthcare professionals, and seasoned EDSers to guide them on their journey to currently available management options. Our team prides ourself on not re-inventing the wheel and leave our doors open for collaboration with other like-minded charities and nonprofit organizations.

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This organization's nonprofit status may have been revoked or it may have merged with another organization or ceased operations.

Community Stories

11 Stories from Volunteers, Donors & Supporters

1 JimandLisa S.

Volunteer

Rating: 5

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!!

Sarah111

General Member of the Public

Rating: 5

My name is Sarah Daniels and I have hypermobility ehlers-danlos syndrome. I mistakenly came across the phone number for this organization on the internet and with nowhere else to turn I decided to give them a call. I left a message and really didn't expect an answer back. After all, I had been in contact with the other few centers around the United States and none of them could help me. Nadia was so over-the-top helpful to me. She gave me faiith I was literally ready to give up. This Foundation has given me hope. I owe them a lot.

Mark195

General Member of the Public

Rating: 5

I've had the honor of meeting and becoming good friends with Nadia Bodkin President and CEO of EDSers United. She has put her heart and soul into EDSERS United Organization. Nadia cares so much about everyone effected by this crippling disease. Without EDSERS United these people have nobody to turn to for support. Please help support Nadia Bodkin and EDSERS United a much needed organization moving forward.

2

Volunteer

Rating: 5

Edsers United is an amazing organization run by Nadia. Nadia Ford go above and beyond for her members and the community by spreading awareness for Ehlers Danlos And other connective tissue distorts, dysautonomia as well. This group has helped us when out son was diagnosed almost four years ago by directing us to certain specialists and setting up group meeting to meet others! We're proud to help out this organization whenever we can!

1

General Member of the Public

Rating: 4

I was diagnosed with a rare form of EDS decades ago. This illness can be very isolating. Having a group like EDSers United allows patients to come together and share experiences and support. A great resource to have.

1

General Member of the Public

Rating: 4

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.

1

Donor

Rating: 5

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!

1

Volunteer

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.

1

Volunteer

Rating: 5

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.

2 Tom_29

General Member of the Public

Rating: 5

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.