With 10,000 known rare diseases, the chances of being diagnosed with one in the United States are 1 in 10. That’s 30 million Americans affected. Fewer than 5% of rare diseases have an effective treatment leaving millions without options.At Notre Dame, studying rare diseases is a priority that places patients and families at the center of our work.The Boler-Parseghian Center for Rare Diseases was one of the first basic science rare disease research centers in the country, and Notre Dame Science recently launched the nation’s first minor in rare disease patient advocacy.https://go.nd.edu/FightingForRareDiseases
More from What Would You Fight For?
- 2:01Fighting for Breast Cancer PatientsThe breast cancer diagnosis was scary for Jennifer Ehren ‘99, but what was worse was the chemotherapy that rendered her sicker than doctors had ever seen.Because most chemotherapy patients don’t know until after their treatment if it was successful, her husband, Tom O’Sullivan, an associate professor of electrical engineering, wondered if there was a safe, easy, and inexpensive way to monitor the tumor during treatment. When one didn’t exist, he created it.The result is NearWave, a handheld device that uses light to monitor changes in a tumor. NearWave allows doctors to track whether a woman will respond to a chemotherapy regimen.Learn more: https://go.nd.edu/95757f
- 1:01Still fightingThe beloved What Would You Fight For series celebrates 100 episodes, and Notre Dame continues its fight to improve the lives of others
- 2:01Fighting For Our Cultural HeritageWhen Russia invaded Ukraine in February 2022, the world watched in disbelief and horror as one sovereign nation invaded another.The University of Notre Dame has had a long relationship with the Ukrainian Catholic University, the first Catholic university in the post-Soviet world. When our colleagues, our partners and our friends were in danger, we asked how we could help.Professors Bill Donaruma and Ian Kuijt traveled to Ukraine to teach students on the ground the tenets of archeology and film so they could begin to document their important cultural sites, which are under constant threat.Learn more: https://go.nd.edu/0a0a45
- 2:01Fighting For Those With Cystic FibrosisIreland has the highest rates of cystic fibrosis in the world. One in every 19 people carries the gene for the genetic condition that damages the lungs and other organs through repeated infections.Together with partners at Trinity College Dublin, two Notre Dame professors, Al Cerrone ‘09 and Rob Nerenberg, are considering new ways to treat the disease. Because cystic fibrosis patients often take antibiotics, resistance and toxicity are chronic fears. Finding ways to make the antibiotics more effective, even reducing dosage amounts, could prevent side effects.The multidisciplinary team is looking at unusual combination treatments involving antibiotics and ultrasound, which have shown remarkable effectiveness.Learn more: https://go.nd.edu/7d31ab
- 2:01Fighting for Intelligent Solutions that Save Lives
- 2:01Fighting to Grow the Good in BusinessVictoria Nyanjura ’20 MGA survived a harrowing capture by the Lord’s Resistance Army in Uganda. Her story of sorrow and distress eventually brought her to hope. That hope came from education, and she’s committed to providing it to other women at Saint Bakhita’s Vocational School where she is now the head of school.Saint Bakhita’s opened to serve LRA kidnapping survivors like Victoria, but for many years, the school teetered on the brink of closure. Then Notre Dame Professor Wendy Angst stepped in to help. She and the students in her Innovation and Design Thinking class in the Mendoza College of Business are working alongside the students at Saint Bakhita’s to develop creative ways for the school to become self-sufficient and profitable.Learn more: https://go.nd.edu/FightingtoGrowGoodinBusiness
