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Newsletter for the centronuclear and myotubular myopathy community

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2019

    • Audentes news 2019
    • Dynacure news 2019
    • Dr Alfred J Spiro, 1930 – 2019
    • Myotubular and Centronuclear Myopathy Patient Registry update
    • Professor Laurent Servais appointed to MDUK Oxford Neuromuscular Centre
    • Myotubular Trust fundraising events 2019
    • US MTM-CNM family conference 2019
    • German Family Conference 2019
    • The Big Sunflower Project 2019 (mid year report)
    • Meet the researcher: Valentina Lionella
    • Strong Will
    • College search
    • NMC Training and Development
    • The RECENSUS Study of Patients with X-Linked Myotubular Myopathy (XLMTM)
    • Dynacure: official opening of new laboratories
    • Graduate researcher
    • National conversation on rare diseases
    • Action for Access
    • The Big Sunflower Project 2019 (end of year report)
    • Easyfundraising
    • A decade of connections: US MTM-CNM family conference 2019
    • 2020 European family conference
    • Myotubular Trust fundraising events 2020
    • Fundraising for RubĂ©n
    • A new star is born in Italy
    • Kyle kayaks
    • I.Lead
    • Gordon W. Evans Art Leadership Award
    • The power of four
    • Milosz’s flying experience

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