Recruitment request: SMA patient and family study

The Centre for Community-Driven Research (CCDR*) are partnering with SMA and MD organisations in Australia to conduct a study to understand the experience of those affected by SMA and their needs in relation to future treatment, support, care and information. This study will result in a report that we can all use for future advocacy efforts – including future decisions about access to treatment. It is a rare opportunity to have the collective SMA community voice heard, BUT we can’t do this without you. Registration is open now and will close on 31 May 2017 For more information or to register go to¬†http://www.peekprogram.org/sma/

(*CCDR are a charity that conducts research to support advocacy efforts, particularly in rare disease areas so that everyone has a chance to have their voice heard www.cc-dr.org)

 

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