Stay Connected
Virtual conferences, research updates, and community gatherings for the global DNM1 family.
Virtual conference coming in 2026.
We are planning our first virtual patient and research conference, bringing together families, researchers, and clinicians from around the world. Details to be announced — sign up below to be the first to know.
Recent highlights.
CombinedBrain
Member of the COMBINEDBrain consortium, connecting us with shared outcome measures and biomarker research across the rare neurodevelopmental disease community.
Joined in January 2026.
Citizen Health Digital Registry
Collaboration with Citizen Health to build a natural history study through patient-reported data.
Global Patient Outreach
Volunteers working in Japan, China, and LATAM to identify and connect DNM1 families worldwide.
Rare Epilepsy Network
Proud member of the Rare Epilepsy Network, connecting us to the broader rare epilepsy community.
