Page 313 Cite

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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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

Page 314 Cite

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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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

Page 315 Cite

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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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

Page 316 Cite

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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