Rosângela Moro meets with Boler-Parseghian Center to discuss rare diseases and Niemann-Pick Type C

Author: Jessica Sieff

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Moro Visit 1200On right: Rosângela Moro

Rosângela Moro, who accompanied her husband, Judge Sergio Moro, to the University of Notre Dame for his commencement address to the graduating class of 2018, spoke with faculty and staff May 21, 2018, to learn about the University’s research and outreach programs related to rare and neglected diseases.

Moro is an attorney in Brazil who assists patients with disabilities, and is also a patient advocate for families seeking medication and treatment. She met with Barbara Calhoun, outreach coordinator for the Boler-Parseghian Center for Rare and Neglected Diseases, who presented how the Center connects patients and their families with researchers and helps raise awareness. They also discussed strategies for helping patients participate in clinical trials and gain access to medications.

Moro also met with John Crowley, a Notre Dame alumnus and chairman and CEO of Amicus Therapeutics, to discuss the challenges of clinical trials for the pharmaceutical industry. At McCourtney Hall, Moro met with Paul Helquist, a professor of synthetic organic chemistry who specializes in drug discovery for rare diseases.

Helquist and Moro discussed Notre Dame’s commitment to research of Niemann-Pick Type C (NPC), a genetic disease usually appearing in early childhood that causes abnormal accumulation of cholesterol in cells in the spleen, liver, lungs, bone marrow and brain. There are an estimated 109 cases of NPC in Brazil, according to Moro, though it’s likely many more children go undiagnosed.