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Light Up for Rare Disease Day at The Pavilion at the Hospital of the University of Pennsylvania

February 28

Magnolia Wang, a Biology Major and University Scholar at the University of Pennsylvania, has conducted in-depth research on the STAC3 gene and its associated genetic disorder, Native American Myopathy (NAM), and seeks to raise awareness of the rare disease and advocate for comprehensive genetic testing and research. NAM is a putative autosomal recessive disorder of the STAC3 gene that affects musculoskeletal growth and development with high prevalence in the Lumbee Tribe, a Native American community in North Carolina facing poverty, insufficient healthcare coverage, and poor access to genetic counseling and screening.

Magnolia has also founded and published STAC3.org, providing insight on the natural history, epidemiology, inheritance, research, and clinical presentation of STAC3 disorder.

Magnolia hopes to promote awareness of rare genetic diseases, and has worked with Senior Genetic Counselor Stephanie Asher to illuminate The Pavilion at the Hospital of the University of Pennsylvania. The Pavilion, a massive 1.5-million-square-foot, 17-story facility with 504 patient rooms and 47 operating rooms, recently opened in 2021. The Pavilion has a state-of-the-art lighting system, in which Magnolia and Ms. Asher have successfully programmed to display NORD’s signature colors for the Light Up for Rare event on February 28th, NORD Rare Disease Day.

Details

Date:
February 28
Event Category:
Website:
https://www.stac3.org/