Chief, Division of Metabolic Disorders
Children's Hospital of Orange County (CHOC)
Genetic Counselor
Children's Hospital of Orange County (CHOC)
Rare Community Member
Patient Advocate
Grace Fisher Foundation
Clinical Sexologist, Clinical Sex Therapist
Dr. Fynan Counseling, Coaching & Consulting
Executive Director
Hemophilia Foundation of Southern California
Executive Director
Dreamsickle Kids, Inc
Assistant Professor, Associate Director of Research for the UW Genetic Counselor Studies Program, Department of Pediatrics, Division of Genetics and Metabolism
University of Wisconsin School of Medicine and Public Health
Board Member/Legislative Director
Sickle Cell Association of Houston
Co-founder
Project Guardian
MD Candidate, BS, Patient
Boonshoft School of Medicine
Founder
Remember The Girls
Professor, Microbiology, Immunology & Molecular Genetics; Pediatrics (Hematology/Oncology); Molecular & Medical Pharmacology
UCLA, CIRM
Information and Resource Services Manager
National Organization for Rare Disorders
Award Winning Writer, Director, Disability Advocate
Attending Pediatric Oncologist, Clinical Instructor
UCSF
Rare Community Member, CEO
Speragen, Inc
Creator & Founder
Rare Mamas
Pediatric Genetic and Rare Disease Scientist
Cientifica Latina
Professor and Vice Chair of Human Genetics and Professor of Psychiatry
David Geffen School of Medicine at UCLA
Delaware Ambassador
NORD Rare Action Network (RAN)
Founder, CEO
The Mighty
Founder
ALD Alliance
Certified HIPAA Compliance officer, ACMA Prior Authorization Certified Specialist
Founder & Principal JLS Consulting LLC
Deputy Director
Partnership to Improve Patient Care
Rare Community Member
Founder and Lead Advocate
STAC3.org and NORD Students for Rare Chapter at the University of Pennsylvania
We sincerely thank the members of our national planning committee for sharing their time, talents, and expertise with us to assist with the careful selection of session topics and connection-making opportunities at this year’s Living Rare Forum.
Jose Abdenur, MD
Children’s Hospital of Orange County (CHOC)
Victoria Arreola
Rare Action Network
Erica Barnes, MA, CCC-SLP
Minnesota RDAC, University of Minnesota
Nicole Cameron
Running for Rare
Gina Glass
Dreamsickle Kids, Nevada RDAC
Nazia Harque
Michigan State University, Students for Rare
Alicia Lawrence, LMSW
NORD
Sean Riley
Amyloidosis Speakers Bureau
Becky Strong
Pemphigus & Pemphigoid Foundation
Jean Walsh, LSW
Friedreich’s Ataxia
Magnolia Wang
University of Pennsylvania, Students for Rare