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 found 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 improving 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 into the Wellness Institute for Rare Conditions (W.I.R.C.). To learn more about W.I.R.C. visit www.WIRC.center. 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 conditions. We have evolved as an organization which is reflected in our mission statement to meet the needs of those significantly afflicted by rare genetic conditions with the development of the Wellness Institute for Rare Conditions. While our primary focus is to advance research and provide clinical treatment and management to our rare patients, we will continue to support community networks that encourage awareness, support, sharing of information and self-preservation globally through grants awarded to patient advocacy organizations dedicated to serving the community that best represents the patients we serve. To learn more about our plans for W.I.R.C., Click Here.
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:
Over 7000 rare diseases and disorders have been identified, 80% of which are genetic in origin. EDSers United is dedicated to addressing the need for research and effective treatments for rare genetic conditions with the development of the Wellness Institute for Rare Conditions. If you are in support of the development of this center of excellence, state of the art facility, providing comprehensive care to patients with rare genetic conditions, process your pledge today.
By joining our voices, we create a powerful force for rare disease recognition, research development, and the establishment of a future filled with hope, positive beliefs, cures and treatment options. We welcome you to join our cause today.
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Registered EDS Organizations
Ehlers-Danlos Syndrome is a group of rare genetic conditions. 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!