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The Ehlers-Danlos Syndromes (EDS) are a group of Connective Tissue Disorders, rarely diagnosed, but not rare. They are characterized by hypermobile joints, stretchy skin, and malfunctioning organs. Most EDSers can live happy and full lives, with proper differential diagnosis, preventative care, and mobility aids.
EDS Resource Network (EDSRN), a 501(c)(3) nonprofit of Utah, provides aid, education, and support to the Ehlers-Danlos Syndromes (EDS) patients, caregivers, and medical providers across the state.
Aid
*Aid - As proper diagnoses and required genetic testing provide patients with more effective and directed care, a primary mission of EDSRN is to offer monetary support to those in financial need.
Education
*Education - Through educating the patient, medical provider, and the community at large, EDSRN brings awareness, understanding, and up-to-date information about EDS, other Connective Tissue Disorders (CTD), and related and comorbid disorders.
Support
*Support - Support is provided by directing those with the EDS or other CTD and healthcare providers to existing resources such as scholarly articles, local support groups, and other nonprofits.
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By providing these things, EDSRN is improving the lives of Utahns living with EDS, CTD and related disorders by supporting accurate diagnoses and effective interventions through financial and community support.