Our World

Newsletter for the centronuclear and myotubular myopathy community

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2017

  • The Big Sunflower Project
  • Sunflowers for Emil
  • Research news
  • An interview with Jim Dowling
  • Dynacure joins ongoing Natural History Study in Centronuclear Myopathies
  • Audentes Therapeutics announces dosing of first patient in a clinical trial for the treatment of X-Linked myotubular myopathy
  • An update on The Myotubular and Centronuclear Myopathy (MTM and CNM) Patient Registry
  • Fundraising walks
  • US MTM-CNM family conference 2017
  • Myo the travelling turtle: 2017
  • German General Meeting and Family Conference
  • Rare Disease Day and Blue for the Cure
  • Picture perfect
  • Sixteen candles
  • Profile of the RYR-1 Foundation
  • Shave or save
  • BBC Radio 4 charity appeal
  • Easyfundraising
  • New collaboration with Action Medical Research
  • Respiratory care in centronuclear and myotubular myopathy
  • A short film about Jackson
  • A short film about Adam
  • The intern

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