Selected Heritable Disorders of Connective Tissue and Disability (2022)
Chapter: Appendix A: Public Session Agendas
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 |
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 |
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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