Alisha Stone has a BA in psychology and is dedicated to improving the lives of others living with chronic illnesses.

    This Drug is the Best and Worst News for Cystic Fibrosis
    This CF drug is good news for health... and also awful news financially.

    This Drug is the Best and Worst News for Cystic Fibrosis

    Not long ago, Vertex Pharmaceuticals scored a big one for their investors—the European Commission has approved the use of ORKAMBI® (lumacaftor/ivacaftor), for the treatment of cystic fibrosis. This breakthrough treatment will be used…

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    NY Rangers Love This Little Girl with Tyrosinemia. See Why!
    NY Rangers play hockey with little girl with Tyrosinemia Type 1.

    NY Rangers Love This Little Girl with Tyrosinemia. See Why!

    News services recently picked up a fascinating story that I think everyone should read! Little 8-year-old Kayleigh Petersen, from East Brunswick, New Jersey, stunned a packed crowd of loyal hockey…

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    Can Someone PLEASE Make Sense of the Latest CF Research?! It’s Gobbledygook!

    I know. I know—nobody likes sifting through a bunch of scientific research “shtuff.” I sure don’t—especially when they don’t dumb it down for a layperson to understand. But when we’re…

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    How This Young Woman’s Double D’s Are Changing the World
    Disease and Depression. What this woman with EDS can teach all of us in the rare disease community.

    How This Young Woman’s Double D’s Are Changing the World

    Double D's. And not the good kind. Disease and Depression. All too often, after being diagnosed with a chronic illness, patients just give up. They withdraw. They stop trying. They…

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    What Every Pregnant Woman Should Know About Newborn Testing
    Every pregnant woman should know about this SCID testing.

    What Every Pregnant Woman Should Know About Newborn Testing

    When I joined millions of other obsessed fans who watched what’s become the wildly popular “Bubble Boy” episode on Seinfeld back in 1992, I had no idea there was a shred…

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    How and Why You Should Get Big Money for HoFH Medication
    The PAF is increasing its efforts to fund co-pays for those suffering from HoFH.

    How and Why You Should Get Big Money for HoFH Medication

    If you or your loved one is living with homozygous familial hypercholesterolemia (HoFH), you’re going to be thrilled with this news--and you deserve it, too! The Patient Advocate Foundation (PAF) just announced on November 2nd,…

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    How to Avoid FH Rabbit Holes and Dig the Truth

    Familial hypercholesterolemia (FH),  a genetic disorder associated with extremely high levels of LDL cholesterol, can be frightening. Many people are diagnosed in infancy, and it’s not uncommon for even children…

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