Uploaded February 2025 | Updated September 2026, 1 week ago
In the United States, a disease must affect fewer than 200,000 people to be considered rare, but there are over 8,000 known rare diseases. That leaves the chances of being diagnosed with a rare disease in the U.S. at around 1 in 10, yet research and funding remain scarce.
Rare diseases, commonly referred to as "orphan diseases," are often overlooked. As a result, effective treatments exist for less than 5% of all rare diseases, leaving millions of people without viable options.
Notre Dame is committed to understanding, treating, and advocating for those affected by rare diseases. This episode of Notre Dame Stories explores how researchers at the Boler-Parseghian Center for Rare Diseases are driving groundbreaking research to uncover new treatments and bring hope to patients and families.
Guests
• Barb Calhoun, Reisenauer Family Director for Patient Advocacy Education and Outreach; Director of Minor in Science and Patient Advocacy
• Sean Kassen, Director of the Ara Parseghian Medical Research Fund at the University of Notre Dame
Show links:
• Watch on YouTube (youtu.be/P1B-7jm2s4Q)
• Episode page (https://stories.nd.edu/podcasts/advancing-rare-disease-research-and-patient-advocacy/)
• Fighting For website (https://fightingfor.nd.edu/)
• Fighting for those with Rare Diseases (https://fightingfor.nd.edu/2024/fighting-for-those-with-rare-diseases/)
• Patient Advocacy Initiative (https://patientadvocacy.nd.edu/)
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Notre Dame Stories is the official podcast of the University of Notre Dame. It was created by the Office of Public Affairs and Communications and hosted by Jenna Liberto with Executive Producer Andy Fuller. It was produced by Jenna Liberto, Josh Long, and Staci Stickovich. Videography was done by Zach Dudka, Josh Long, Tony Fuller, and Michael Wiens. Original music was provided by Alex Mansour. Listen and subscribe wherever you get your podcasts.
In the United States, a disease must affect fewer than 200,000 people to be considered rare, but there are over 8,000 known rare diseases. That leaves the chances of being diagnosed with a rare disease in the U.S. at around 1 in 10, yet research and funding remain scarce.
Rare diseases, commonly referred to as "orphan diseases," are often overlooked. As a result, effective treatments exist for less than 5% of all rare diseases, leaving millions of people without viable options.
Notre Dame is committed to understanding, treating, and advocating for those affected by rare diseases. This episode of Notre Dame Stories explores how researchers at the Boler-Parseghian Center for Rare Diseases are driving groundbreaking research to uncover new treatments and bring hope to patients and families.
Guests
• Barb Calhoun, Reisenauer Family Director for Patient Advocacy Education and Outreach; Director of Minor in Science and Patient Advocacy
• Sean Kassen, Director of the Ara Parseghian Medical Research Fund at the University of Notre Dame
Show links:
• Watch on YouTube (youtu.be/P1B-7jm2s4Q)
• Episode page (https://stories.nd.edu/podcasts/advancing-rare-disease-research-and-patient-advocacy/)
• Fighting For website (https://fightingfor.nd.edu/)
• Fighting for those with Rare Diseases (https://fightingfor.nd.edu/2024/fighting-for-those-with-rare-diseases/)
• Patient Advocacy Initiative (https://patientadvocacy.nd.edu/)
-----
Notre Dame Stories is the official podcast of the University of Notre Dame. It was created by the Office of Public Affairs and Communications and hosted by Jenna Liberto with Executive Producer Andy Fuller. It was produced by Jenna Liberto, Josh Long, and Staci Stickovich. Videography was done by Zach Dudka, Josh Long, Tony Fuller, and Michael Wiens. Original music was provided by Alex Mansour. Listen and subscribe wherever you get your podcasts.
