Who We Are
Our History
The CGD Association of America (CGDAA) was founded in 2019 to advocate for patients and X-linked female CGD carriers with Chronic Granulomatous Disease (CGD). We have the largest community of patients and X-linked female carriers with CGD in the world. Currently, our database has 550 patient contacts and more than 200 CGD physician specialists/influencers worldwide.
Thanks to the CGDAA’s reputation as a trusted resource, the organization’s database has become the largest in the world; this robust collection of patient and carrier data has enabled important IRB-approved, patient-centered surveys and studies. In addition to funding important research, our organization also publishes a monthly e-newsletter for the community and holds well-attended online events to help connect our rare community and provide education.
Given the rarity of CGD, the disease can feel isolating. The CGDAA is committed to helping patients and carriers know they’re not alone.
Ongoing projects:• The CGDAA has provided a $25,000 research grant to the Primary Immune Deficiency Consortium to investigate the health issues facing female X-linked carriers of CGD and the long-term post-transplant outcomes for patients with CGD.
Medical Advisory Board
Harry Malech, MD
Kathleen Sullivan, MD, PhD
Kathleen Sullivan, MD, PhD
National Institutes of Health
Chief, Genetic Immunotherapy Section
Deputy Chief, Laboratory of Clinical Immunology and Microbiology
National Institute of Allergy and Infectious Diseases, National Institutes of Health
Kathleen Sullivan, MD, PhD
Kathleen Sullivan, MD, PhD
Kathleen Sullivan, MD, PhD
Chief of the Division of Allergy and Immunology, Children's Hospital of Philadelphia
Jennifer Leiding, MD
Kathleen Sullivan, MD, PhD
Jennifer Leiding, MD
Adjunct Associate Professor John's Hopkins University and Attending Physician, Orlando Health Arnold Palmer Hospital for Children
Peter Newburger, MD
Christopher Chang, MD, PhD, MBA, FAAAAI
Jennifer Leiding, MD
Attending Physician, Dana-Farber/Boston Children's Cancer and Blood Disorders Center
Mary Dinauer, MD, PhD
Christopher Chang, MD, PhD, MBA, FAAAAI
Christopher Chang, MD, PhD, MBA, FAAAAI
Fred M. Saigh Distinguished Chair of Pediatric Research Professor of Pediatrics , Washington University School of Medicine St. Louis Children’s Hospital
Christopher Chang, MD, PhD, MBA, FAAAAI
Christopher Chang, MD, PhD, MBA, FAAAAI
Christopher Chang, MD, PhD, MBA, FAAAAI
FACAAI Chief, Immunology, Allergy and RheumatologyMemorial Healthcare System, Joe DiMaggio Children’s Hospital
CGDAA Junior Leadership Council
The Junior Leadership Council represents young leaders in our community who are committed to making a difference in the field of CGD / Primary Immune Deficiencies.
Lydia Sancho
Erynn Hunkapiller
CGDAA Administration & Patient Advisory Board
Executive Board
Female Carriers of X-Linked CGD Advisory Board
Patient Advisory Board
Felicia B. Morton
Denise Proffitt
Barbara D. Morton
Patient Advisory Board
Female Carriers of X-Linked CGD Advisory Board
Patient Advisory Board
Robert Karp, patient with CGD
Scott Vogel, former CGD patient after successful transplant
Carla Dean, autosomal patient with CGD
Female Carriers of X-Linked CGD Advisory Board
Female Carriers of X-Linked CGD Advisory Board
Female Carriers of X-Linked CGD Advisory Board
Maren Chamorro
Gina Continenza
Kiron Dhalilwal
Alia Naffouj
Marianne Rørholt (Norway)