The National Organization of African Americans with Cystic Fibrosis (NOAACF) hosted its 2nd Annual BIOMERGD (Blacks, Indigenous, and Other Minority Ethnicities with Rare and Genetic Diseases) Annual Conference on Saturday, February 26, 2022 at (1:00 pm) CST.
The BIOMERGD conference coincided with Rare Disease Day on February 28, 2022 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 2022 conference focused on sickle cell disease and multiple myeloma. It featured two physician speakers who are national leaders in their field – Dr. Astrid Mack who spoke about sickle cell disease and Dr. Tondre Buck who spoke about multiple myeloma.
Other guest speakers included Dr. Jennifer D. Shedden, MD, PhD (Sponsor Presentation LatinX Among CF); Joanice Thompson (Improving Health Equity Through Inclusive Research); Dr. Susanna A. McColley, MD (Terry Wright’s Law); and Dr. Jennifer Taylor-Cousar, MD (The Wright Cystic Fibrosis Screening Tool). Dr. Timothy Quinn, MD, also led a panel made up of experts, patients, and caretakers who shared their unique experiences.
