On February 29, 2024, the Price Center/Block Research Pavilion buzzed with energy as clinicians, researchers, and community members gathered to observe Rare Disease Day 2024. Under the theme "Rare Diseases That Aren’t That Rare in the Bronx", the event shed light on genetic disorders that disproportionately impact local populations.

During the event, experts such as Dr. John Greally and Dr. Srilakshmi Raj shared insights into cutting-edge research and the genetic variants prevalent in New York City’s diverse communities. A particular highlight was the focus on Hermansky-Pudlak Syndrome (HPS) and Setleis Syndrome, conditions found more frequently in Puerto Rican populations. The session, led by Dr. Carmen Cadilla, included a compelling panel discussion with Ms. Donna Appell, founder of the HPS Network, and Dr. Marion.

Personal stories brought these discussions to life. Ms. Lauren Figueroa shared her family’s experience with Steel Syndrome, alongside Dr. Greally, offering attendees a heartfelt perspective on living with rare conditions.

The event closed with an invitation to Main Street, leaving attendees informed, inspired, and united in their commitment to advancing research and support for rare diseases in the Bronx and beyond.

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