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Selected Heritable Disorders of Connective Tissue and Disability (2022)

Chapter:Appendix A: Public Session Agendas

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Suggested Citation:"Appendix A: Public Session Agendas." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Heritable Disorders of Connective Tissue and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26431.
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Suggested Citation:"Appendix A: Public Session Agendas." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Heritable Disorders of Connective Tissue and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26431.
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Page314
Suggested Citation:"Appendix A: Public Session Agendas." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Heritable Disorders of Connective Tissue and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26431.
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Page315
Suggested Citation:"Appendix A: Public Session Agendas." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Heritable Disorders of Connective Tissue and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26431.
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Page316

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Appendix A Public Session Agendas MEETING 2: PUBLIC SESSION Hosted by the Committee on Selected Heritable Disorders of Connective Tissue and Disability May 11, 2021 Virtual via Zoom Agenda Public Session I 10:05–11:15 p.m. Eastern Daylight Time 10:05 a.m. Welcome and Introductions Paul Volberding, Committee Chair Steven Rollins, Deputy Associate Commissioner, Office of Disability Policy, SSA 10:10 a.m. Social Security Administration Presentations Relevant to the Committee’s Task Andrea Bento, Policy Analyst, Office of Medical Policy/ Office of Disability Policy, SSA 10:30 a.m. Questions and Discussion 11:15 a.m. Adjourn Public Session I 313

314 SELECTED HERITABLE DISORDERS OF CONNECTIVE TISSUE Public Session II 12:15–2:00 p.m. Eastern Daylight Time 12:15 p.m. Gastrointestinal Conditions in Heritable Disorders of Connective Tissue Laura A. Pace, M.D., Ph.D. Center for Genomic Medicine University of Utah 12:30 p.m. Questions and Discussion 12:50 p.m. Orthostatic Intolerance in Heritable Disorders of Connective Tissue Peter C. Rowe, M.D. Director, Children’s Center Chronic Fatigue Clinic Sunshine Natural Wellbeing Foundation Professor and    Professor of Pediatrics Johns Hopkins Children’s Center 1:05 p.m. Questions and Discussion 1:25 p.m. Mental Health Conditions Associated with Heritable Disorders of Connective Tissue Antonio Bulbena-Vilarrasa, M.D., Ph.D., M.Sc. (Cantab) Distinguished Professor of Psychiatry Chair, Department of Psychiatry and Forensic Medicine Universitat Autònoma de Barcelona 1:40 p.m. Questions and Discussion 2:00 p.m. Adjourn Public Session II

APPENDIX A 315 MEETING 3: PUBLIC SESSION Hosted by the Committee on Selected Heritable Disorders of Connective Tissue and Disability July 9, 2021 Virtual via Zoom Agenda 10:15–11:15 a.m. Eastern Daylight Time 10:15 a.m. Welcome and Introductions Paul Volberding, Committee Chair Steven Rollins, Deputy Associate Commissioner, Office of    Disability Policy, SSA 10:20 a.m. Panel Discussion: Perspectives on Living with Heritable Disorders of Connective Tissue Maggie Buckely, M.B.A., B.C.P.A., Patient Advocate Jon Rodis, M.B.A., National Disability and Medical    Advocate for Rare Disorders Alissa Zingman, M.D., MPH, Founder and CEO of   P.R.I.S.M. 10:45 a.m. Questions and Discussion 11:15 a.m. Adjourn

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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.

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