Megan K. Crowley Award for Patient Advocacy

Congrats to Danielle Terek! Danielle received the Megan K. Crowley Award for Patient Advocacy.

Rdd Award 1 Student

John M. and Mary Jo Boler Rare Disease Research Award

Congrats to Elena Kolarevic! Elena received the John M. and Mary Jo Boler Rare Disease Research Award in honor of the parents of Matt Boler and Jill McCormack and the resonance of their generous philanthropy with rare diseases. 

Rdd Award 2 Student


RareND Team builds ZEBRA, award-winning app in Notre Dame App Challenge and goal for Precision Medicine!


The ND App Challenge was sponsored by the Office of the Executive Vice President, and organized by SAP, Innovation Park at Notre Dame and the Office of Information Technologies.  In the challenge, over 70 teams from across Notre Dame created mobile apps responsive to President Rev. John I. Jenkins, C.S.C. call to action “I now ask all of you to join me in supporting these collaborative efforts to advance our vision of Notre Dame as a powerful force to heal, unify and enlighten our world.” Congratulations to Anna Volk, Will Langbo, Kim Trouch, and Katherine Inskeep for an important advocacy tool for patient-centered medicine and winning 3rd place in the first ND App Challenge! Precision Medicine is a revolution in health care. It seeks the zebra because it looks for what makes you unique. This is the rare disease model. In a rare disease, every patient unique. This is why the individual patient is at the center of rare disease treatment, empowered to collaborate to fund research and share their complex biological and health data in a network of doctors, patients and advocates, in search of transformative outcomes. "When you hear hoof beats, think of horses not zebras" was how Dr. Theodore Woodward at the University of Maryland counseled medical interns in 1940s.  But the best of medicine today seeks the zebra in all of us. This is the goal of ‘Precision Medicine’, where we leave behind the ‘average’ patient and instead focus on individual differences in genes and other molecular determinants, as well as the impact of environment and life style, to understand a patient’s disease and how to treat it.