At Dyne, we are committed to listening to and learning from the communities we serve—including individuals and families living with DM1, DMD and FSHD. Your stories inspire us. Equally important, they provide insights and information about disease burden and meaningful benefit that we know is critical to developing truly transformative therapies.
Each February, Rare Disease Day aims to raise awareness of the impact that rare diseases have on over 300 million people around the world.
In 2022, Dyne hosted members of the DM1, DMD and FSHD communities to discuss the importance of recognizing Rare Disease Day and our shared commitment to supporting people living with rare muscle diseases. Watch the video to hear their perspectives.
Dyne has partnered with Notre Dame to support its new minor in science and patient advocacy, a unique program to prepare the next generation of leaders for careers focused on improving patient care. In September 2021, Dyne collaborated with Notre Dame to convene a Rare Patient Advocacy Summit at the university, followed by hosting two students from the Class of 2022, Bailey Perczak and Alyssa DiPaolo, as summer interns. Watch Bailey and Alyssa, as well as leaders from Notre Dame and Dyne, describe the importance of incorporating community members’ voices in the drug development process.