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

Debbie Drell

Director of Membership Services

NORD

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