Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

    Von Willebrand Disease, the Lesser Known Cousin of Hemophilia—Learn Why
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    Von Willebrand Disease, the Lesser Known Cousin of Hemophilia—Learn Why

    I first became aware of the bleeding disorder hemophilia when I was in high school reading about Nicholas II, the last Russian tsar. His son had severe hemophilia B, which…

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    Man With SMA Gets Stuck When Airline Leaves His Wheelchair Behind
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    Man With SMA Gets Stuck When Airline Leaves His Wheelchair Behind

    Spinal muscular atrophy (SMA) occurs when the immune system attacks motor neurons, resulting in the muscles surrounding the spinal cord atrophying (degenerating). SMA is an inherited disorder that disables the…

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    Happy Father’s Day to All Rare Dads
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    Happy Father’s Day to All Rare Dads

    I’ll admit that I ran wild as a kid. I never got into trouble—you know what I mean, I was never arrested, no animals were harmed, and no injuries were…

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    Boy With ROHHAD Has Precious Wish Granted by Kind Farmer
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    Boy With ROHHAD Has Precious Wish Granted by Kind Farmer

    I recently wrote about an 11-year-old Canadian girl who has an extremely rare disease called rapid-onset obesity with hypoventilation, hypothalmic dysfunction and autonomic dysregulation, or ROHHAD. There are roughly 100…

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    A Community Rallies Around Girl with ROHHAD
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    A Community Rallies Around Girl with ROHHAD

    Until recently, the term ROHHAD meant nothing to me. But, then, I heard about an 11-year-old Canadian child named Denika Bailey who has this rare disorder. The letters stand for:…

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    Chudley-Rozdilsky-Houston Syndrome: Only Two People in the World Have It
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    Chudley-Rozdilsky-Houston Syndrome: Only Two People in the World Have It

    Chudley-Rozdilsky-Houston Syndrome (named for the researchers who have studied the syndrome) is thought to be an autosomal recessive trait that causes multiple diseases, including developmental delays. Among the maladies of…

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    Clear Your Fall Schedule and Join a Walk for the Immunodeficiency Foundation
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    Clear Your Fall Schedule and Join a Walk for the Immunodeficiency Foundation

    When you have an immunodeficiency disease, you’re very much at risk of getting an opportunistic infection because your immune system isn’t “scanning” your body’s cells to kill off abnormal or…

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    Prematurity Places Babies at Risk for BPD – Know the Facts
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    Prematurity Places Babies at Risk for BPD – Know the Facts

    Bronchopulmonary dysplasia, or  BPD, is a chronic lung disease that most commonly occurs in premature infants and is caused by a reaction to being on mechanical ventilation, or from being on…

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    That Twinkle in Your Eye Might be Uveitis… Here’s What You Need to Know!
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    That Twinkle in Your Eye Might be Uveitis… Here’s What You Need to Know!

    I think most people experience eye problems at one point or another. Maybe your child came home with "pink eye," and before long, everyone in the household had itchy, burning…

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    A Grandfather’s Love is Helping This Girl Fight Spinal Muscular Atrophy
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    A Grandfather’s Love is Helping This Girl Fight Spinal Muscular Atrophy

    Spinal muscular atrophy (SMA) is caused by the loss of motor neurons in the spinal cord and the brainstem. It leads to weakness and muscle wasting that affects a baby's ability…

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