Sarah, who is living with myotonic dystrophy type 1 (DM1), a disease with no approved therapies, and Dyne’s former Chief Medical Officer, Wildon Farwell, discuss how a meaningful therapeutic option could change her life and the challenges of treating DM1.
Committed to
the communities we serve
We support all people, families and caregivers living with rare diseases, this Rare Disease Day and every day
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 benefits that we know is critical to developing truly transformative therapies.
Joining Forces is a series of conversations between community members and Dynamos. Through these discussions, we aim to learn more about the impact peoples’ disease has on their daily lives, their hopes for the future and to answer questions about Dyne’s efforts to advance potentially life-transforming therapies. Through our endeavors and collective experiences, we are stronger together.
Sarah and Wildon | Episode 1
Alan and Ash | Episode 2
Alan, who is living with Duchenne muscular dystrophy (DMD), and our Chief Medical Affairs Officer, Ash Dugar, discuss one of the biggest unmet needs of the DMD community and how critical the community voice and their perspectives are to Dyne.
Pat and Debra | Episode 3
Pat, who is an Advisor for Parent Project Muscular Dystrophy’s Adult. Advisory Committee and is living with muscular dystrophy and our Chief Regulatory Affairs Officer, Debra Feldman, discuss Regulatory’s role in developing therapeutics for rare muscle diseases and what Dynamos should know as we work on advancing life-transforming therapies for people living with genetically driven diseases.
Pat and Ash | Episode 4
President and Chief Executive Officer of Parent Project Muscular Dystrophy, Pat Furlong, and our Chief Medical Affairs Officer, Ash Dugar discuss their collaborative publication published in Research Involvement and Engagement on the importance of patient engagement in clinical trial design.
Rare Disease Day
Each February, Rare Disease Day aims to raise awareness of the impact that rare diseases have on over 300 million people around the world.
Dyne hosted members of the rare muscle disease community, Dynamos and their families to commemorate Rare Disease Day. At Dyne, our community members are experts who continue to educate us about their disease and experience. Embracing the “All Access” theme, individuals from DMD, DM1 and FSHD communities led education booths, sharing valuable information and insights with our Dynamos.
2023 Rare Disease Day
2022 Rare Disease Day
2021 Rare Disease Day Fireside Chat
2020 Rare Disease Day
World FSHD Day
Every year on June 20th, we join the FSHD community in recognizing World FSHD Day. In recognition of World FSHD Day, Dynamos share orange slice selfies to support the FSHD Society’s annual campaign to build awareness of facial weakness experienced by some people living with FSHD that can make smiling difficult.
2023 World FSHD Day
2022 World FSHD Day
2021 World FSHD Day Panel Discussion
2020 World FSHD Day Fireside Chat
World Duchenne Awareness Day
Every year on September 7th, we join the Duchenne community in recognizing World Duchenne Awareness Day.
2024
2021 World Duchenne Awareness Day Panel Discussion
2020 World Duchenne Awareness Day Fireside Chat
International Myotonic Dystrophy Awareness Day
Every year on September 15th, we mark International Myotonic Dystrophy Awareness Day.
2024
Dyne and Notre Dame: A shared commitment to patient advocacy
Dyne has partnered with Notre Dame to support its minor in science and patient advocacy, a unique program to prepare the next generation of leaders for careers focused on improving patient care. Since September 2021 Dyne has collaborated with Notre Dame to convene a Rare Patient Advocacy Summit at the university, followed by hosting two students as summer interns.
2022 Rare Patient Advocacy Summit
2021 Dyne and Notre Dame: A Shared Commitment to Patient Advocacy
Watch students from the Class of 2022, 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.
