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.
This organization's nonprofit status may have been revoked or it may have merged with another organization or ceased operations.
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.
Donor & Volunteer Advisory
This organization's nonprofit status may have been revoked or it may have merged with another organization or ceased operations.
Health
