Notre Dame Patient Advocacy Initiative receives support from Dyne Therapeutics

Author: Notre Dame News

Main Building Aerial (Photo by Barbara Johnston/University of Notre Dame)

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. In addition, Dyne has pledged a similar amount of in-kind support for the program. 

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 nearly 8,000 identified rare diseases. 

“We are thankful for the leadership of Dyne Therapeutics to partner with us in this endeavor,” Santiago Schnell, the William K. Warren Foundation Dean of the College of Science, said. “Their support acknowledges Notre Dame’s expertise in rare disease research and demonstrates faith in our ability to educate future patient advocates. This gift will train our future physicians, researchers and industry professionals to be forces for good for patients with rare diseases.”

Beyond the generous financial support provided, the partnership will leverage the talent, expertise and reach of Dyne Therapeutics to promote patient-informed rare disease training, advocacy and research.

“We are excited to partner with Dyne to build connections between rare disease stakeholders and to train the next generation of health care providers and industry professionals, with the ultimate goal of elevating the voice of the patient community to build awareness of rare diseases,” Barbara Calhoun, director of patient advocacy education and outreach at Notre Dame, said. 

Dyne Therapeutics joined forces with Notre Dame to sponsor an inaugural Patient Advocacy Summit in the fall of 2021. Its financial and in-kind support will enable the University to expand this and other education and outreach programs to better serve the rare disease community.

“We’re proud to partner with Notre Dame to advance our shared commitment to patient advocacy,” Joshua Brumm, president and chief executive officer of Dyne, said. “The University’s minor program is a unique initiative that will help students understand the power of engaging the rare disease patient community in advancing drug development and improving clinical care. A medical degree isn’t the only way for students to make a difference in a patient’s life. We were pleased to be a part of the initiative’s first summit and host student interns this summer, and we look forward to continuing to support this effort to prepare today’s students to be tomorrow’s leaders in careers focused on advancing patient care.”

Dyne Therapeutics is a clinical-stage muscle disease company focused on advancing innovative life-transforming therapeutics for people living with genetically driven diseases. With its proprietary FORCE platform, Dyne is developing modern oligonucleotide therapeutics that are designed to overcome limitations in delivery to muscle tissue seen with other approaches. Dyne has a broad portfolio of programs for serious muscle diseases, including candidates for myotonic dystrophy type 1, Duchenne muscular dystrophy and facioscapulohumeral muscular dystrophy.