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Notre Dame Patient Advocacy Initiative receives founding gift from Horizon Therapeutics

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.

Horizon Therapeutics, a biotechnology company whose mission is to deliver medicines for rare, autoimmune and severe inflammatory diseases, has made a founding five-year gift to establish the University of Notre Dame’s Patient Advocacy Initiative in the College of Science.

The Notre Dame Patient Advocacy Initiative is centered on the interdisciplinary minor in science and patient advocacy and draws on the University’s research strength in rare and neglected diseases. It is estimated that 30 million people in the United States, or 1 in 10, are living with a rare medical condition. Although understanding the experience of a person with a rare disease can enable improved health, faster and more accurate diagnosis and better care for individuals and families living with rare diseases, medical professionals often do not receive training to recognize a patient with one of the some 7,000 identified rare diseases.

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. The gift will support curriculum development and experiential learning opportunities. It will also offer students a unique opportunity to work directly with a rare disease nonprofit to navigate challenges unique to the rare disease community, drawing from connections to hundreds of patient advocacy groups that Horizon has engaged with through its day-to-day work, as well as the company’s #RAREis program. The partnership will kick off with a Patient Advocacy Summit on Notre Dame’s campus Friday (Sept. 16).

“We are grateful for this generous support from Horizon Therapeutics, which demonstrates its commitment to patient advocacy and acknowledges Notre Dame’s expertise in rare disease research and the institution’s commitment to patients and their families,” said Santiago Schnell, the William K. Warren Foundation Dean of the College of Science. “This gift will help the next generation of physicians, researchers and industry leaders to become forces for good for patients with rare diseases.”

“In our work, we are constantly learning from incredible rare disease advocates who are mobilizing people living with rare diseases to create communities and advance science toward potential new treatments,” said Tim Walbert, chairman, president and chief executive officer of Horizon. “It is crucial that we support Notre Dame’s innovative Patient Advocacy Initiative to help train the next generation of patient advocates and serve a broader segment of the rare disease community.”

Barbara Calhoun, director of patient advocacy education and outreach at Notre Dame, added: “The need for skilled patient advocates is clear. Lack of understanding of rare diseases, the length of time to diagnosis, a lack of specialists and ineffective treatments are a few of the challenges rare disease patients face. We want to equip our students to become understanding patient advocates in their future careers as physicians and researchers. Our goal is to build collaborations among patients, families, students, researchers, clinicians and industry. This gift helps put the Notre Dame Patient Advocacy Initiative on a path to forming successful patient advocates.”

Notre Dame aspires to be the premier institution for rare disease research, training and advocacy, and serve as a benchmark for institutions around the world. In partnership with Horizon Therapeutics, the University will build on collective assets to enhance health outcomes and provide a voice for those most in need.

Horizon is a global biotechnology company focused on the discovery, development and commercialization of medicines that address critical needs for people impacted by rare, autoimmune and severe inflammatory diseases. It believes science and compassion must work together to transform lives. In February 2017, Horizon launched the #RAREis program aimed at elevating the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources for the rare disease community. The program is anchored by an Instagram page and website that showcases photos and stories of people touched by rare disease and captures elements of their patient, caregiver or advocate experience. To learn more, visit the #RAREis Instagram and Facebook page and visit the website at www.RAREisCommunity.com.

Notre Dame has been dedicated to finding cures for rare diseases since the early 2000s. At that time, there was a single faculty member working on one disease. In 2014, the College of Science established the Boler-Parseghian Center for Rare and Neglected Diseases with aspirations of becoming a national center of excellence for rare disease research and expanding the breadth of diseases studied at the University. Today, the Boler-Parseghian Center is one of only three academic rare disease centers in the country focused on basic research, and faculty are seeking cures for 12 different diseases. In the fall of 2021, the College of Science launched the first minor program in the country focusing on rare disease patient advocacy.

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