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Newsletter for the centronuclear and myotubular myopathy community

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2020

  • Dynacure news 2020
  • Research award for Tamoxifen clinical trial in the UK
  • Hospital
  • Myotubular Trust 2020 grant call
  • Female carriers of X-linked myotubular myopathy invited to join a new study
  • Good news stories (part one)
  • The Big Sunflower Project 2020 (mid year report)
  • An announcement from Toni: founder of The Information Point and The Big Sunflower Project
  • The Big Sunflower Project 2020 (end of year report)
  • UK patient update webinar
  • Update on the Myotubular and Centronuclear Myopathy Patient Registry
  • A spotlight on HACD1-associated congenital myopathies
  • ActiMyo® research survey
  • Introducing Lori Gorski
  • Good news stories (part two)
  • 14th memorial golf day for Jack

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