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.

    Why Every Month Should Be Ehlers-Danlos Syndrome Awareness Month
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    Why Every Month Should Be Ehlers-Danlos Syndrome Awareness Month

    Did you ever get that weird feeling when you've arrived at the party, but almost all the guests have already departed? Yes, you are definitely late, late, late. That's how I feel…

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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…

    Continue Reading Do You Have Pulmonary Arterial Hypertension? Here’s What to Look For
    World Duchenne Awareness Day is Coming This September!
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    World Duchenne Awareness Day is Coming This September!

    You’ve heard the expression, “What’s in a name?” How about, “What’s in a number?” September 7 is World Duchenne Awareness Day. It occurs on that day every year because the 7th…

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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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    Mountain Climber with Hemophilia Conquers Mt. Everest to Raise Awareness
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    Mountain Climber with Hemophilia Conquers Mt. Everest to Raise Awareness

    Let's talk about Mount Everest. It sits on the border between Nepal and China and its peak is 29,029 feet above sea level--which makes it the highest mountain on earth.…

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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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    Knowing the Symptoms of Ovarian Cancer May Save Your Life
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    Knowing the Symptoms of Ovarian Cancer May Save Your Life

    Ovarian cancer is the most deadly form of reproductive organ cancers. Why? Because it's usually not diagnosed until it has reached the late stages because the symptoms are often overlooked,…

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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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    Curing White Coat Syndrome: If Something Doesn’t Sound Right, Speak Up!
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    Curing White Coat Syndrome: If Something Doesn’t Sound Right, Speak Up!

    Here in the United States, we tend to put doctors on a pedestal. So much so, many of us experience a rise in blood pressure in the office. There’s even a…

    Continue Reading Curing White Coat Syndrome: If Something Doesn’t Sound Right, Speak Up!
    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…

    Continue Reading That Tingling in Your Feet Might Be GBS – Know the Symptoms
    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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    If Age is a Numbers Game, How Old is Too Old?
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    If Age is a Numbers Game, How Old is Too Old?

    I recently read an article that was focused on amyotrophic lateral sclerosis (ALS) and how cases of this degenerative motor-neuron disease are expected to increase as the world population ages.…

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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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    If Your Child Had a Status Epilepticus Situation, Would You Know?
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    If Your Child Had a Status Epilepticus Situation, Would You Know?

    Any parent watching their child have an epileptic seizure can tell you that even the shortest seizure seems to last forever. In the case of a seizure that goes on for…

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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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    Cushing’s Disease is Tough to Diagnose, but Help is Available
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    Cushing’s Disease is Tough to Diagnose, but Help is Available

    The pituitary gland is a pea-sized gland that acts as the body’s “master control” and governs the functioning of almost all of the other endocrine organs in the body. These are…

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    Arthritis Foundation Saves the Day for One Young Man with JIA

    Juvenile idiopathic arthritis (JIA) is the most common form of arthritis in children. It occurs when the body's autoimmune system attacks healthy tissue and causes inflammation of the joints. What triggers…

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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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