we serve
At Dyne, we are committed to listening to and learning from the communities that we aim to serve, including individuals and families living with myotonic dystrophy type 1 (DM1), Duchenne muscular dystrophy (DMD) and facioscapulohumeral muscular dystrophy (FSHD). Their stories inspire us. Equally important, these insights guide our development of targeted therapies designed to deliver what patients value most: functional improvement.
Below are links to correspondence we’ve written to individuals and families affected by the diseases we focus on, addressing significant events and topics.
Rare Disease Day aims to raise awareness of the impact that rare diseases have on more than 300 million people around the world.
To commemorate Rare Disease Day, Dyne hosted members of the neuromuscular disease community, Dynamos and their families, and welcomed Rick Guidotti of Positive Exposures. During his presentation, Rick shared powerful messages, challenging our perceptions of social and cultural norms defining beauty and ability. Through his stunning photography and advocacy, Rick is redefining how we ‘see’ people with rare diseases and disabilities, emphasizing humanity, joy and beauty in everyone. Community leaders living with rare diseases shared their experiences with and insights into how interactions with society often focus on their disabilities rather than their potential. Their stories emphasized the need for change in how people living with rare diseases are seen, treated and included.
2024 Rare Disease Day
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.
2024 World FSHD Day
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.
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.
