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.

    Are Stem Cell Transplants the Future of Treatment for Sickle Cell Anemia?
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    Are Stem Cell Transplants the Future of Treatment for Sickle Cell Anemia?

    Have you ever tried to fit a square peg into a round hole? Short of taking a mallet to the peg, you’re not going to be successful in pushing it…

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    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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    Transverse Myelitis: A Tricky Disease With No Rhyme or Reason
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    Transverse Myelitis: A Tricky Disease With No Rhyme or Reason

    The spinal cord is a major part of the central nervous system, and when it becomes inflamed, transverse myelitis results. It often causes a band-like sensation across the trunk of…

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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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    We Need to Find a Cure for Sickle Cell Anemia… Here’s Why
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    We Need to Find a Cure for Sickle Cell Anemia… Here’s Why

    Here's the rundown on sickle cell anemia. It causes a person to have abnormal hemoglobin (sickle hemoglobin) in their red blood cells. In order to understand what I'm talking about,…

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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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    Nothing About Addison’s Disease is Simple, Here’s Why
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    Nothing About Addison’s Disease is Simple, Here’s Why

    People with Addison's disease often appear just fine on the outside, but on the inside, it's another story. Why? Just above the kidneys are two hormone-producing glands called the adrenal…

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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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    Calling the Behcet’s Community! Reserve the Dates: June 23 – 25, 2017
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    Calling the Behcet’s Community! Reserve the Dates: June 23 – 25, 2017

    Behcet's disease falls under the umbrella of autoimmune diseases and disorders. It affects approximately 400 of 100,000 people in Turkey, and is also commonly found in the Middle East. It…

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