The SPA Minor provides skills to collaborate with researchers, clinicians, regulators, pharmaceutical companies, and patients to bridge gaps in knowledge exchange and enhance positive health outcomes.| Patient Advocacy Initiative
The Patient Advocacy Initiative is proud to offer a variety of ways students can gain hands-on, real-world experience working with rare disease patients...| Patient Advocacy Initiative
In our Beyond the Minor series, we’re continuing to share reflections from students and alumni who carry the lessons of Notre Dame’s Minor i...| Patient Advocacy Initiative
In the latest Advocacy in Action feature, Class of 2026 student Tim Theisen reflects on his journey into advocacy: one that began with a personal connec...| Patient Advocacy Initiative
Megan Crowley ('19) knows firsthand that rare disease is not just a diagnosis — it's a lens through which you see the world. Diagnosed with a rare...| Patient Advocacy Initiative
The SPA Minor provides skills to collaborate with researchers, clinicians, regulators, pharmaceutical companies, and patients to bridge gaps in knowledge exchange and enhance positive health outcomes.| Patient Advocacy Initiative
For Brooke Borton, advocacy began with a deeply personal motivation: supporting her cousin after a rare disease diagnosis. That experience sparked inter...| Patient Advocacy Initiative
As we celebrate the 20 MSPA students from the class of 2025, we’re highlighting journeys that have shaped their advocacy work. Kim Nguyen entered the Minor in Science and Patient Advocacy with a desire to better understand the human side of healthcare. While preparing to graduate,…| Patient Advocacy Initiative | News
Rare disease research can be as uncommon as the diseases themselves, but Notre Dame is committed to understanding, treating, and advocating for those affected by rare diseases. Read…| Patient Advocacy Initiative | News
On Friday, May 17, the Patient Advocacy Initiative honored 17 new graduates from the Minor in Science and Patient Advocacy. In reflecting upon their time in the program, a few students shared thoughts about the impact of the minor: The minor has had such a huge impact on my …| Patient Advocacy Initiative | News
You don’t know what it is to be an advocate until you are one. That was never more clear to Harry and Gail Koujaian than when their 5-year-old daughter, Hayley, began having difficulty with motor function, verbal communication, and sight words. Then she had her first seizure. It took…| Patient Advocacy Initiative | News
As part of the #LightUpForRare movement on Rare Disease Day, students in the Minor in Science and Patient Advocacy create luminaries that are displayed in the Jordan Hall Galleria to honor those who are impacted by rare diseases: patients, families, friends, researchers, clinicians and more. Those…| Patient Advocacy Initiative | News
Rare diseases are ones for which fewer than 200,000 people across the United States have at any given time — but they’re Front row: Cayla Reisenauer;…| Patient Advocacy Initiative | News
The third annual Rare Disease Patient Advocacy Summit was held on Friday, October 13, 2023 in the Downes Ballroom of Corbett Family Hall. Over 180 guests were in attendance and represented an array of patients and caregivers, leaders from the biotech industry, Notre Dame students and alumni, faculty…| Patient Advocacy Initiative | News
While in Dublin for the Aer Lingus College Football Classic, Dean Santiago Schnell, Barbara Calhoun, and Katrina Conrad joined Horizon Therapeutics at their Dublin office to celebrate Notre Dame's work in rare disease, including the Minor in Science and Patient Advocacy, which is the first-ever rare…| Patient Advocacy Initiative | News
Current Science & Patient Advocacy senior, Jake Weber, has recently been featured on the #RAREis Blog where he elaborated on his experience in the Minor in Science and Patient Advocacy. The #RAREis program is sponsored by Horizon Therapeutics, a founder of the Notre Dame Patient Advocacy Initiative. …| Patient Advocacy Initiative | News
The Boler-Parseghian Center for Rare and Neglected Diseases hosted the 14th Annual Conference for Advancing Rare Disease Research, Therapy, & Patient Advocacy on March 3-4, 2023. The event featured plenary sessions by top researchers from around the country as…| Patient Advocacy Initiative | News
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Several members of the Notre Dame Patient Advocacy community attended Dyne Therapeutics’…| Patient Advocacy Initiative | News
The second annual Rare Patient Advocacy Summit was held on September 16, 2022 in the Jordan Hall of Science. The College of Science welcomed the various stakeholders in raising awareness to the…| Patient Advocacy Initiative | News
Support from Horizon Therapeutics will enable the Patient Advocacy Initiative to provide comprehensive programming that advances training, outreach and research to better serve the rare disease community.| Patient Advocacy Initiative | News
Dyne Therapeutics, a leading muscle disease company focused on advancing innovative, life-transforming therapeutics for people living with genetically driven diseases, has made a commitment of $500,000 over five years in support of the University of Notre Dame’s Patient Advocacy Initiative.| Patient Advocacy Initiative | News
In our new Advocacy in Action series, we’re sharing stories that highlight how Notre Dame’s patient advocacy training extends beyond the cla...| Patient Advocacy Initiative