The National Organization of African Americans with Cystic Fibrosis (NOAACF) hosted its 3rd Annual BIOMERGD (Blacks, Indigenous, and Other Minority Ethnicities with Rare and Genetic Diseases) Annual Conference on Saturday, February 25, 2023 at 1:00 pm CST.
he BIOMERGD conference coincided with Rare Disease Day on February 28, 2023 and took place during Black History Month.
There are more than 7,000 different rare diseases, collectively affecting more than 350 million people around the world. Ethnic and racial minorities may also experience a higher incidence and prevalence of rare diseases than the general population for a variety of reasons, genetic and otherwise. Indeed, racial and ethnic minorities and other underserved populations are likely to experience even greater barriers to screening, diagnosis, and treatment of rare diseases than for common conditions due to a variety of cultural, socioeconomic, and environmental factors.
NOAACF’s BIOMERGD conference helps to increase awareness of rare diseases in minority communities by focusing on one genetic disease and one rare disease each year. The 2023 conference focused on Myastenia Gravis as its rare disease and Hemophilia as its genetic disease. It featured two keynote speakers and leaders in their field – Myastenia Gravis keynote speaker, Dr. Gathline Etienne, MD, Neurologist and Neuro ophthalmologist, Piedmont and Healthcare and Founder of Paragon Wellness, in Newnan, Georgia; and Hemophilia keynote speaker, Dr. Roshni Kulkarni, MD, Director Emerita and Professor Emerita Pediatric Hematology/Oncology, Department of Pediatrics and Human Development, Michigan State University Center for Bleeding and Clotting Disorders in East Lansing, Michigan.
Other guest speakers included: Rachel “Rae” Alder, NOAACF Patient Advocate who introduced herself, her story, and how she looks forward to her role as NOAACF Patient Advocate; Dr. Jennifer D. Shedden, MD, PhD, Multicultural CF Medical Consultant and Honorary Advisory Board Member for the Bonnell Foundation (Topic: “Past, Present and Future – Latinos Living with CF (CF Familia) Resource Hub”); Bijal Trivedi,Senior Science Editor at National Geographic & Award-Winning Author of Breath of Salt (Topic: Why I Had to Write “Breath from Salt,” and Why I Continue to Report on Cystic Fibrosis presentation); and Dr. Meghan McGarry MD, MAS, Associate Professor of Pediatrics, Pediatric Pulmonology, USCF School of Medicine and Benioff Children’s Hospitals, in San Francisco, California (Topic: Detection of Disease-Causing CFTR Variants in State Newborn Screening Programs).
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BIOMERGD recording coming soon! Please check back!
