EDSers United was founded in December of 2010, a few months after the founder, Nadia Bodkin, received a diagnosis of EDS. After receiving her diagnosis, she found that the EDS community was suffering from neglect, misinformation, and a severe deficiency in community support programs and resources. This encouraged the incorporation of EDSers United as a nonprofit public charity. Since our incorpora
tion, 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 nonprofit organizations with mission statements dedicated to advancing those affected by Ehlers-Danlos Syndrome in some form, most of which are focused on awareness and patient advocacy work. Our purpose is to meet the unmet needs of our community. Based on the services currently being provided to our rare community by disease specific and non-disease specific organizations, our team at EDSers United has decided to develop the Treatment and Research Center for Rare Genetic Conditions. Our purpose is to focus on advancing research, improve diagnostic tools, and to establish treatment and management options for underserved rare genetic conditions. Our entire team is committed to our mission. We need the support of the community in order to show our sponsors that the rare disease community does in fact demand the development of the Treatment and Research Center for Rare Genetic Conditions. 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.
