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It always hurts when a loved one gets sick. However, the emotional toll and stress increases when you are the primary caregiver for a close family member or friend living with a rare condition for which effective treatments and sufficient support services may be lacking. The National Alliance for Caregiving (NAC), in partnership with Global Genes, a rare-disease advocacy organization, hope to glean greater insights into just what challenges unpaid caregivers of loved ones with rare conditions are facing. The groups have joined forces to survey more than 1,400 American adults currently providing unpaid care to a child or adult with one of more than 400 rare conditions.  

The Ehlers-Danlos Society has announced the largest single donation in its 33-year history to establish an international research network of leading physicians, geneticists, and other health professionals devoted to finding the underlying genetic markers for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). From Transformational Gift to Ehlers-Danlos ‘MOONSHOT’ The anonymous gift of $1 million dollars, represents the largest individual gift in the history of hypermobile EDS research. “Because hypermobile Ehlers-Danlos lacks a known genetic cause, this truly has the potential to be a transformational gift,” states Lara Bloom, International Executive Director of The Ehlers-Danlos Society, a global leader in Ehlers-Danlos research, collaboration, and support.