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  • Blog

    This little piggy went to the hospital

    The unknown issue With SMA comes so many new unknown issues, things that you never even thought would become a daily issue. At the end of 2021, I was experiencing extremely…

  • Blog SMA Awareness

    What makes you rare?

    Rare Diseases Day 2021 This year for World Rare Disease Day on 28th February 2022, Rare Diseases South Africa is redefining what it means to be “RARE”. RDSA is calling on South…

  • Blog

    Living in the unknown

    There are so many unknowns for rare disease patients and often nowhere to get the answers. Rare disease patients can be each other’s sounding boards and the best place to get…

  • Blog

    Hope…

    Hope is a word that we all know and understand but it is not necessarily a concept that we all use every day. I hope for change with creating accessibility in…

  • Blog

    #youcansitwithus

    #youcansitwithus Everybody wants to feel as if they belong, everybody wants to be a part of a team or group. Unfortunately, not everybody always feels welcome. I was born with a…

  • Blog

    Losing control

    Hey all, This last Sunday started like a pretty normal day. We went to a market with the fam, feeling spring in the air and excited for a day out. Then…