Notre Dame Stories17 Helmi 2025

Advancing Rare Disease Research and Patient Advocacy

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 Episode page Fighting For website Fighting for those with Rare Diseases Patient Advocacy Initiative ----- 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.

Tämä jakso on lisätty Podme-palveluun avoimen RSS-syötteen kautta eikä se ole Podmen omaa tuotantoa. Siksi jakso saattaa sisältää mainontaa.

Jaksot(93)

Inside Artemis II mission control

For seven hours, Notre Dame alumna Kelsey Young ’09 sat in NASA mission control, listening as astronauts described the moon in real time from a vantage point no human had ever experienced before. You...

5 Touko 15min

What happened to the American family?

In this episode of Notre Dame Stories, Melissa Kearney, economist and director of the Strengthening Families Research Initiative, explores the decline in marriage, the rise of single-parent households...

7 Huhti 14min

How do you measure success?

What does it really mean to be successful? Joe Holt has lived enough lives to make most résumés look boring—including time as a Jesuit priest, a stockbroker, a corporate attorney, and even an Ironma...

11 Maalis 13min

Cold Plunges and Unicorns

What can extreme cold teach us about the human body—and ourselves? In this episode, Director of the Human Energetics Laboratory and anthropologist Cara Ocobock takes listeners inside her research on...

6 Helmi 17min

A human-centered framework for AI Ethics

Questions about artificial intelligence are everywhere—shaping public debate, influencing industry, and surfacing deep uncertainties about what it means to be human. At Notre Dame, philosopher Meghan ...

4 Joulu 202513min

New tech to help stop the spread of bird flu

On a family farm in Ohio, more than a million hens produce eggs that fill grocery shelves across the Midwest. Behind the scenes, farmers like Jordan and Thomas Hertzfeld are working tirelessly to keep...

5 Marras 202514min

Improving Hurricane Forecasts

How do you improve hurricane forecasts? By studying one of the most powerful and destructive forces on Earth up close—where the ocean meets the atmosphere. In this episode of Notre Dame Stories, Pr...

1 Loka 202513min

A better start for NICU families: Notre Dame leads the way in neonatal intensive care research

In this episode, Kathleen Kolberg, Ph.D., Associate Dean, College of Science, Office of the Dean, Assistant Director of the Center for Health Sciences Advising, shares how Notre Dame helped set the st...

29 Touko 202532min