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As the opening plenary speaker at the National Organization for Rare Disease summit, Dr. Fasipe shares from her unique perspective as doctor and patient of sickle cell disease.
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.
Traditionally, the position of the opening plenary speaker has gone to individuals who shared personal experiences with a rare disease. Fasipe has a unique perspective as a patient and a doctor of sickle cell disease.
In her talk, Fasipe mentions the importance of successful partnerships. It's not uncommon for a patient of rare disease to feel isolated or alone in their experience.
"There's not enough awareness about them in the community," Fasipe said about rare diseases, "even the medical community."
When people or organizations partner together, it can make all the difference. Whether it's healthcare institutions, government agencies, or even local community based organizations, there's strength in working together.
"At the end of the day the goal is to bring exposure and light to that disease and the most important part is to improve the outcome, the quality of life of the people who have that disease," Fasipe explained. "Just because your disease affects less people in the country does not make it less important."