National Academies of Sciences, Engineering, and Medicine
I am sharing some groundbreaking work and direct research that was done for the Social Security Administration by a very dedicated team of doctors and advocates and the National Academies of Sciences, Engineering and Medicine that I was very honored and proud to be a part of. The report was published last month and I wanted to make sure you all receive it and get a chance to read it first hand.
Jon R.
Selected Heritable Disorders of Connective Tissue and Disability (2022)
Heritable disorders of connective tissue (HDCTs) are a diverse group of inherited genetic disorders and subtypes. Because connective tissue is found throughout the body, the impairments associated with HDCTs manifest in multiple body systems and may change or vary in severity throughout an affected individual’s lifetime. In some cases, these impairments may be severe enough to qualify an eligible child or adult for monetary benefits through the U.S. Social Security Administration’s (SSA’s) Social Security Disability Insurance or Supplemental Security Income program. SSA asked the National Academies of Sciences, Engineering, and Medicine to convene an expert committee that would provide current information regarding the diagnosis, treatment, and prognosis of selected HDCTs, including Marfan syndrome and the Ehlers-Danlos syndromes, and the effect of the disorders and their treatment on functioning. The resulting report, Selected Heritable Disorders of Connective Tissue and Disability, presents the committee’s findings and conclusions.
Contributor(s): National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Committee on Selected Heritable Disorders of Connective Tissue and Disability; Paul A. Volberding, Carol Mason Spicer, Tom Cartaxo, and Roberta A. Wedge, Editors
Selected Heritable Disorders of Connective Tissue and Disability |The National Academies Press