Aimee Adelmann, B.S. Marketing Vice President Education and Awareness, Director of Education and Outreach Cystinosis Research Network, Donate Life Northwest |
Eleni Anagnostiadis, RPh, MPM Director, Professional Affairs and Stakeholder Engagement FDA |
Kristen Angell Associate Director of Advocacy NORD |
Donna Appell, RN Executive Director Hermansky-Pudlak Syndrome Network |
Brandon G. Briery, Ph.D. Clinical Child/Pediatric Psychologist, Chief Program Officer/Executive Camp Director Children's Association for Maximum Potential (CAMP) |
Maya Brown-Zimmerman, MPH Patient advocate & caregiver The Marfan Foundation |
Shannon Brush, MS Caregiver Texas Central Hemohilia |
Mindy (Melinda) Burnworth, PharmD, FASHP, FAzPA, BCPS Professor of Pharmacy Practice, Adult Internal Medicine / Arizona Rare Action Network Volunteer State Ambassador Midwestern University College of Pharmacy-Glendale / National Organization for Rare Disorders |
Lindsay Burrage, MD, PhD Assistant Professor Baylor College of Medicine |
Marni Cartelli Advocacy Committee Chair RSDSA |
Hsiao-Tuan Chao, MD, Ph.D. Assistant Professor Baylor College of Medicine |
Shweta Dhar, MD, MS Associate Professor Baylor College of Medicine |
Lisa Emrick, MD Medical Director of Neurogenetics and Assistant Professor Division of Pediatric Neurology and Developmental Neuroscience, Baylor College of Medicine and Texas Children's Hospital |
Albert Freedman, Ph.D. Psychologist and Parent Independent Practice, West Chester, PA |
Amy Gietzen Patient, Advocate and Public Speaker Scleroderma National Foundation |
Andrew Hardwick Public Affairs Specialist Social Security Administration |
Albert Hergenroeder, MD Professor of Pediatrics Baylor College of Medicine |
Tiffany House, JD President Acid Maltase Deficiency Association |
Becky Jennings-Damery, SHRM-CP Benefits Manager Pappas Restaurants, Inc. |
Jordan Kemere, MD, MS Assistant Professor of Internal Medicine Transition Medicine Clinic, Baylor College of Medicine |
Brendan Lee, MD, Ph.D. Professor and Chairman Department of Molecular and Human Genetics at Baylor College of Medicine |
Andrea (Andi) Lewis, MS, CGC Clinical Instructor and Certified Genetic Counselor Baylor College of Medicine and Texas Children's Hospital |
Pamela Mace, RN Executive Director Fibromuscular Dysplasia Society of America |
Pilar Magoulas, MS, CGC Certified Genetic Counselor Baylor College of Medicine |
Lisa Massey Program Manager NORD |
Brenda Mertes President CDH Stars & Angels Inc. |
Liz Mizerik, MS, CGC Certified Genetic Counselor Baylor College of Medicine/Texas Children's Hospital |
Neena Niza, rEd.D. Founder and President The Jansen's Foundation |
Luke Prettol Patient |
Julie Raskin, MA Executive Director Congenital Hyperinsulinism International |
Debra Regier, MD, PhD Director of Genomic and Metabolic Education Children's National Rare Disease Institute |
Dr. Sandeep Sahay Assistant Professor Weill Cornell Medical College, Houston Methodist Hospital |
Melissa Skolaski Mother and Caregiver Baylor College of Medicine |
Shauna Sperou Patient, Rothmund-Thomson Syndrome Rothmund-Thomson Syndrome Foundation |
Reid Sutton, MD Professor of Molecular & Human Genetics Baylor College of Medicine & Texas Children's Hospital |
Deborah Tamura, MS, RN, APNG Research Nurse, DNA Repair Section, LCBG Branch NIH/NCI/CCR/LCBG/DNA Repair Section |
Kelly Trout, BSN, RN Director, Research and Medical Advocacy International WAGR Syndrome Association |
Lisa Wang, MD Associate Professor Baylor College of Medicine |
Michael Wangler, MD Assistant Professor Baylor College of Medicine |
Monica Weldon President/CEO Bridge the Gap - SYNGAP Education and Research Foundation |
Mary Jane Williams Executive Director Family to Family Network |
