Titilope Fasipe, MD, PhD: Advocacy for Rare Disease at the NORD Summit

November 18, 2021
Giuliana Grossi

Dr. Fasipe shares about her experience at the National Organization for Rare Disease Summit 2021 as the opening plenary speaker.

Titilope Fasipe, MD, PhD, Assistant Professor of Pediatric Hematology-Oncology, Baylor College of Medicine, was invited to be the opening plenary speaker at the National Organization for Rare Disease (NORD) summit.

In an interview with HCPLive®, Fasipe discussed her experience as a speaker and as a health care provider at the summit. In her plenary presentation, she shared her personal experience as a patient with sickle cell disease.

"What you have at the summit is a true bringing together of expert minds," Fasipe said. "The things that I feel the most energized about are when I see the national leaders coming forth and standing by rare disease."

Fasipe saw Dr. Francis Collins from the National Institutes of Health (NIH) in attendance, as well as leaders from the Center of Disease Control and the US Food and Drug Administration.

When she saw the national leaders teaching at the summit, and being candid about what it takes to help treat various diseases, it had a meaningful impact.

There was a session that educated organizations on smart health policy procedures. According to Fasipe, those are tools that all providers could use. The legislative system isn't exactly intuitive so gaining a better understanding of it is beneficial.

She explained that NORD has been very supportive of diversity initiatives. The summit served as a sort of training ground, according to Fasipe, that addresses the obstacles that come with treating or advocating for any rare disease.


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