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I Spoke to a Leading Expert on Ehlers-Danlos Syndrome. Here Are the Key Takeaways for Our Community.

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For the past two years, a group of experts, advocates, and patients have been gathering as an ad hoc committee of the National Academies of Sciences, Engineering, and Medicine (NASM), per the request of the U.S.

Social Security Administration (SSA). The culmination of this collaborative and Herculean effort has resulted in a first-of-its-kind publication: “Selected Heritable Disorders of Connective Tissue and Disability,” a consensus study report.

What does this mean and why am I so excited? This committee reviewed several heritable disorders of connective tissue (HDCTs), primarily Marfan syndrome and the Ehlers-Danlos syndromes, and created an all-encompassing report about the current state of the diagnosis, treatment, and disease course of the selected conditions.

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