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.

    Got PI? There’s a National Conference for You!
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    Got PI? There’s a National Conference for You!

    Primary immunodeficiency diseases (PI) weaken the body's immune system, leaving patients prone to infections. In very mild cases, the person may not even know they have PI, but in other…

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    Here’s Why Support Groups are So Important in the Narcolepsy Community
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    Here’s Why Support Groups are So Important in the Narcolepsy Community

    San Diego is rumored to have one of the nicest climates in the United States. From what I've heard, it's a balmy 72 degrees almost year-round, and the sky is…

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    Duchenne Muscular Dystrophy Motivated These Parents to Start the Romito Foundation
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    Duchenne Muscular Dystrophy Motivated These Parents to Start the Romito Foundation

    Duchenne muscular dystrophy (DMD) affects approximately 15,000 to 20,000 young boys in the US, but for the Richard and Jamie Romito family, those numbers mean nothing. All three of their sons…

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    This Video Will Melt Your Heart and Raise Money for Diamond Blackfan Anemia Research
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    This Video Will Melt Your Heart and Raise Money for Diamond Blackfan Anemia Research

    Diamond Blackfan anemia (DBA) sounds like the villainous star of an action movie, but it's not. It's an extremely rare blood disorder wherein the bone marrow doesn't make enough red…

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    Get Ready for World PID Week – April 22 – 29, 2017!
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    Get Ready for World PID Week – April 22 – 29, 2017!

    Common variable immune deficiency is just one of a cluster of disorders under the primary immunodeficiency diseases (PID) umbrella. People with this rare condition are often repeatedly misdiagnosed because there is a…

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    Patients with Spinal Muscular Atrophy Celebrate First FDA-Approved Treatment
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    Patients with Spinal Muscular Atrophy Celebrate First FDA-Approved Treatment

    Did you know that the #1 genetic cause of death for infants is spinal muscular atrophy (SMA)? It quickly robs the infant of physical strength, rendering the child unable to…

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    Can This Wrong be Righted for a Long Ago Hansen’s Patient?
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    Can This Wrong be Righted for a Long Ago Hansen’s Patient?

    The way the Japanese government handled Hansen's disease patients during the 20th century wasn't very humane. They were sent to live in sanatoriums, separated from their families, and shunned by…

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    Help Us Raise Awareness About Adrenoleukodystrophy, or ALD!
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    Help Us Raise Awareness About Adrenoleukodystrophy, or ALD!

    The word adrenoleukodystrophy doesn't exactly roll off the tongue, does it? Adrenoleukodystrophy (ALD) is an exceptionally rare genetic disease that affects one in 18,000 males. If you're one of those 18,000 people,…

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    Boy with Williams Syndrome is Among the San Bernadino School Shooting Victims
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    Boy with Williams Syndrome is Among the San Bernadino School Shooting Victims

    A few days ago on April 10, 2017, a terrible tragedy took place in San Bernadino, California. An angry gunman entered a special education classroom in North Park Elementary School and…

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    NASH: Get to Know Your Liver, and the Diseases that Can Affect It
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    NASH: Get to Know Your Liver, and the Diseases that Can Affect It

    Liver disease has many causes and last month, March was Liver Disease Awareness month in Canada. Yes, Canada. That country with the handsomest Prime Minister... ever. (*Sigh*) But I digress. In…

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    Drug for Duchenne Muscular Dystrophy Sails Through FDA Approval, Questioned by Shareholders
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    Drug for Duchenne Muscular Dystrophy Sails Through FDA Approval, Questioned by Shareholders

    Duchenne muscular dystrophy (DMD) is a particularly cruel genetic disease. It most commonly affects boys, who by the age of three, begin to experience muscle weakness in the legs, hips…

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    Hansen’s Disease: Let’s Hope History Won’t Repeat Itself
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    Hansen’s Disease: Let’s Hope History Won’t Repeat Itself

    There's a very funny scene in an old Monty Python movie that shows a body collector calling, "Bring out your dead... Bring out your dead." He heaves another body onto…

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    This Doctor with Tuberous Sclerosis is Also a Patient in Need of a Kidney
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    This Doctor with Tuberous Sclerosis is Also a Patient in Need of a Kidney

    Approximately one million people worldwide have been diagnosed with tuberous sclerosis complex (TSC), a condition where non-cancerous tumors and other lesions grow most commonly in the kidneys, heart, lungs, skin and…

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    Get Ready for the 5th Annual Dysautonomia International Conference!
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    Get Ready for the 5th Annual Dysautonomia International Conference!

    Have you ever felt woozy when you stood up? And maybe it was so bad you actually fainted. One possibility is you have a form of dysautonomia called postural orthostatic…

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    How the HDSA Can Help You Fight Back Against Huntington’s Disease
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    How the HDSA Can Help You Fight Back Against Huntington’s Disease

    Huntington's disease (HD) is one of those rare diseases that prior to diagnosis feels like a coin toss. Will you get it? Will it pass you by? It's a genetic…

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    When Your Child Has Special Needs, So Do You! Seek Support.
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    When Your Child Has Special Needs, So Do You! Seek Support.

    Approximately one in 5,000 babies are born with a birth defect called gastroschisis. When a baby's intestines are protruding through a hole in the stomach wall resulting in the intestines being…

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