The Impact of Underinvestment in Ehlers-Danlos Syndrome

Project description: Ehlers-Danlos Syndrome is under-recognized, and the variety of skeletal and organic manifestations under-appreciated. This leads to delays in diagnosis, misdiagnoses, inappropriate interventions and poor treatment outcomes. The direct and indirect costs to patients, providers, third-parties and government are substantial. This study assesses the baseline state of provider knowledge, patient access to appropriate care, and the costs of inadequacies to both patients and society. The output will be a paper, published in a top journal with subsequent presentations at leading conferences and forums.  Expected duration: 1 year.

Patient impact: The problems highlighted above stem from the medical community’s marginal awareness and treatment of EDS/Hypermobility Spectrum Disorder (HSD).To bring EDS/HSD into the medical mainstream — represented in major research centers, taught in medical schools, discussed in leading journals — we must demonstrate it is a serious disease with life-altering effects on patients and their families and associated high costs. Bluntly, we have to make the case that universities, the NIH, insurance companies, and others should care about EDS/HSD and its patients. The data published in this paper will explicitly make that case, and EDSRF will disseminate it broadly. This is the first step in a longer-term strategy to secure more funding and recognition for research to truly help EDS/HSD patients.