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A few months after Nadia Bodkin, the founder of EDSers United, received a diagnosis of EDS, she turned to YouTube in order to find others with Ehlers-Danlos Syndrome. She expected to find one or two other patients that shared a similar journey to her own and find a global community of individuals desperate for solutions, just like her. Nadia decided to develop an information website where she organized all of the information currently available to those interested in learning more about Ehlers-Danlos Syndrome (EDS).
EDSers.com became popular fairly quickly and received several requests for assistance from various members of the EDS community. Because the EDS community was so obviously suffering from neglect, misinformation, and a severe deficiency in community support programs and resources, Nadia decided to register EDSers United as a nonprofit organization, registered as a public charity, incorporated within the state of New Jersey.
The team at EDSers United has been working so hard and diligently to serve the EDS community through various free-of-charge initiatives, campaigns (i.e the Stay Strong - Stay Connected EDS Awareness Package Mailing Campaign, Personalized EDSer ID Cards, etc.), countless numbers of events and fundraisers to support all of the free literature being dispersed, Community Support Group Meetings, Social Security Disability Assistance, Patient Advocacy for patients at their doctor's appointments, school board meetings, and so much more to help enhance the lives of those affected by Ehlers-Danlos Syndrome and other similar connective tissue disorders. None of the members of the team at EDSers United have collected a salary or received any sort of compensation for their work through EDSers United. Every member of the EDSers United team has volunteered their time, money, energy, and resources to improve the lives of the EDS Community. The impact EDSers United has made on the members of our community is evident in the comments submitted to the Support Wall and the recent rise in patient advocacy activity throughout the EDS community.
Since EDSers United's incorporation into a nonprofit public charity organization, the EDS community has advanced significantly in the realm of global awareness efforts, community support groups and social networks, regular webinars, and active advocacy leaders. There are currently over 22 registered nonprofit organizations with mission statements dedicated to advancing those affected by Ehlers-Danlos Syndrome, most of which are focused on awareness and patient advocacy work. While EDSers United is excited about the spark in patient advocacy efforts within the EDS community, the team is not interested in duplicating efforts. From the very beginning, EDSers United's purpose has been to meet the unmet needs of the community. Based on the services currently being provided to the EDS community by disease-specific and non-disease-specific rare disease organizations, the team at EDSers United has decided to devote all efforts to developing the Wellness Institute for Rare Conditions (W.I.R.C.). The team at EDSers United is comprised of healthcare professionals, scientists, and rare disease patient advocacy leaders. Through partnerships with patient advocacy organizations, EDSers United will continue to remain connected to the rare disease community so that the needs of this orphan community continue to be met.
As detailed above, EDSers United began as a grassroots public charity dedicated to advancing the community of individuals affected by Ehlers-Danlos Syndrome (EDS), a group of rare genetic connective tissue disorders. EDSers United has evolved as an organization which is reflected in our mission to join the global efforts of unifying the rare disease community-based landscape in strength and vocal power. While our primary focus is to advance therapeutic research and development for people diagnosed with debilitating rare conditions, like EDS, we continue to support community-based networks that drive awareness, patient and family support, and the improvement of the overall healthcare system.
EDSers United's Timeline:
Over the years, EDSers United has organized and curated several resources and has developed databases dedicated to making information and resources available to the EDS Community. The following are links to several of these curated resources:
Registered EDS Organizations
Ehlers-Danlos Syndrome is a group of rare genetic conditions that can impact the body systemically. We are happy to say that regardless of EDS being a rare condition, that there are several active leaders and patient advocates serving the EDS Community today. With more than 22 EDS nonprofit organizations currently established around the world, EDS Awareness and the knowledge for the need for research is increasingly gaining public attention via various media outlets. As long as we Stay Strong & Stay Connected, the puzzle that is EDS will be solved!