News & Events

Stay Connected

Virtual conferences, research updates, and community gatherings for the global DNM1 family.

Upcoming

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.

Get notified when details are announced

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Past & Ongoing

Recent highlights.

2025

Ongoing

Citizen Health Digital Registry

Collaboration with Citizen Health to build a natural history study through patient-reported data.

2025

Active

Global Patient Outreach

Volunteers working in Japan, China, and LATAM to identify and connect DNM1 families worldwide.

REN

Member

Rare Epilepsy Network

Proud member of the Rare Epilepsy Network, connecting us to the broader rare epilepsy community.