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.

    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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    Do You Have Pulmonary Arterial Hypertension? Here’s What to Look For
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    Do You Have Pulmonary Arterial Hypertension? Here’s What to Look For

    If you have pulmonary arterial hypertension (PAH), you know it's a rare form of high blood pressure. It affects the arteries that run from the heart through the lungs, causing those…

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    Got a Minute? Learn About Glanzmann’s Thrombasthenia!
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    Got a Minute? Learn About Glanzmann’s Thrombasthenia!

    Glanzmann's thrombasthenia (GT) is an inherited autosomal disorder that begins at birth. It causes prolonged or spontaneous bleeding and affects one out of one million people. Patients tend to bruise easily and…

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    Guillain-Barre Syndrome Can Go From Bad to Worse… and Very Quickly!
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    Guillain-Barre Syndrome Can Go From Bad to Worse… and Very Quickly!

    Guillain-Barre syndrome, or GBS, occurs when the body's immune system attacks the nerves. People will usually notice tingling and weakness in their arms and legs. As annoying as that can feel,…

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    If Someone You Love Has Cystinosis, You Know the Importance of Organ Donation
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    If Someone You Love Has Cystinosis, You Know the Importance of Organ Donation

    Cystinosis breaks my heart. Why, you may ask? Because it robs children of their childhood. I'll explain in a moment--but first, let me give you a general overview of the disease.…

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    That Tingling in Your Feet Might Be GBS – Know the Symptoms
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    That Tingling in Your Feet Might Be GBS – Know the Symptoms

    Guillain-Barre syndrome (GBS) occurs when the body's immune system attacks the peripheral nerves, damaging the myelin insulation. Muscle weakness in the arms and legs are often the first signs of…

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    Group Home Leaves Man with Cerebral Palsy Stranded in the Hospital
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    Group Home Leaves Man with Cerebral Palsy Stranded in the Hospital

    Cerebral palsy (CP) is caused by brain lesions that are non-progressive, meaning the lesions don't cause the brain to further deteriorate. It causes impairment of motor function—the ability to control motion…

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    Hemochromatosis – When the Body Can’t Get the Iron Out
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    Hemochromatosis – When the Body Can’t Get the Iron Out

    Most of us know that not having enough iron in the blood results in disorders like anemia, fatigue, low energy… I first became aware of “iron-poor blood,” or anemia, when…

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    Great News for the HD Community: A New Treatment is Approved!
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    Great News for the HD Community: A New Treatment is Approved!

    More than 35,000 Americans suffer from Huntington's disease (HD), a neurodegenerative disease. Eventually, HD destroys a person's ability to walk, talk, swallow, or have meaningful relationships with friends and family. Chorea is…

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    Researchers Discover a Link Between Sjogren’s Disease and Rheumatoid Arthritis
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    Researchers Discover a Link Between Sjogren’s Disease and Rheumatoid Arthritis

    There are four million people in the United States walking around with Sjogren’s disease, and nine out of 10 of them are women. This autoimmune disease affects the entire body…

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    Get Ready… The NYC Dystonia Patient Symposium is Coming Up Next Week!
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    Get Ready… The NYC Dystonia Patient Symposium is Coming Up Next Week!

    A few years ago, a friend of mine who is a violinist suddenly developed a movement disorder called focal dystonia. His neck began to have intermittent muscle contractions. His head would…

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