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In this video interview, Titilope Fasipe shares a summary of her plenary presentation on sickle cell disease from the National Organization for Rare Disease summit.
Titilope Fasipe, MD, PhD, Assistant Professor of Pediatric Hematology-Oncology, Baylor College of Medicine, served as the opening plenary speaker at the National Organization for Rare Disease (NORD) summit.
In her presentation, Fasipe shed some light on the history of sickle cell disease; she also shared about her personal experience being a doctor and a patient of the rare disease.
Sickle cell disease is a rare disease in the US, but, it's not a rare disease worldwide, Fasipe explained. Millions of people are affected by it around the world compared to under 200,000 people in the US.
"You end up seeing 2 different ways of experiencing the disease," Fasipe said. "I had the experience of having both, because I was born in Nigeria, and then I came to the United States and I've been raised in both places."
During her presentation, Fasipe shared her journey, what led her to medical school, and how she found her advocacy voice.
It was important to her to leave the audience with an understanding of sickle cell disease that included the social determinants of health.
For sickle cell in the US, that includes long-standing historical neglect, systemic racism injustices, poor access to healthcare for many of individuals, as well as decreased community awareness that's seen with all rare diseases, Fasipe explained.
"The good news is, coming together does make things count," she said. "And that was the theme of the session, and so I felt like it was appropriate to show how I see a light at the end of the tunnel even though there's challenges, and part of that is working together with others."