In late January 2021, Dynacure, a clinical-stage drug development company focused on rare diseases, announced that it was granted a patent (U.S. Patent No. US 10, 865, 414) for its…
The Joshua Frase Foundation has released a new eighteen-minute documentary about the family’s fight for more research into gene therapies for myotubular myopathy, the rare condition that Joshua Frase was…
Family Conference 2018 "Together Even Stronger" This conference will be open to patients affected by myotubular and centronuclear myopathies, their families, and caregivers. The event will feature workshops and speakers…
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