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  • 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…

  • Blog

    Is it just a fantasy?

    In life, there are so many moments that feel so real but you know that it is just a dream. What is a dream though? Where do they come from? A…

  • Blog

    MY PARTNER IN CRIME

    Sisters have a special bond but twins have a bond that is undefinable and pure magic! Unknown On October 22, 1997 twins were born at Olivedale clinic. Everything seemed to be…