Screening Test for Navajo Newborns Saves Babies Suffering from Severe Combined Immunodeficiency (SCID)
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Screening Test for Navajo Newborns Saves Babies Suffering from Severe Combined Immunodeficiency (SCID)

Joy Littlesunday is just one of many Navajo newborns who were screened and thus saved from severe combined immunodeficiency by a successful bone marrow transplant at UC San Francisco, reported UCSF…

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The IDF Highlights Life with CVID as Told by a PI Warrior Woman
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The IDF Highlights Life with CVID as Told by a PI Warrior Woman

As seen by her story on IDF's website, for Kayla Kuehl, her diagnosis of an extremely rare disease happened over the course of several years. It's called Common Variable Immune Deficiency…

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CGD News: Genetic Code Editing Makes Animal Testing More Accurate

There is a long-standing debate on the ethical ramifications of testing medical procedures and drug treatments on animals. One side argues that nothing can replace the valuable information gathered from…

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PI Problems: Tips for Going Back to School with a Rare Disease
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PI Problems: Tips for Going Back to School with a Rare Disease

Scratchy jeans. No. 2 pencils. Trapper Binders. Squeaky shoes. Floor polish. Helpful bus drivers. Smiling teachers. Ah, the scents, sights and sounds of the first day of school. I loved…

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Countdown to Cleveland: Why Walking Can Make a Difference This Year for the PI Community
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Countdown to Cleveland: Why Walking Can Make a Difference This Year for the PI Community

Primary immunodeficiency diseases (PI) are a group of more than 300 rare and chronic disorders where part of the body's immune system is missing or does not function properly. Since…

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One Dedicated 70+ Doctor is Trying to Identify Thousands of PID Patients
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One Dedicated 70+ Doctor is Trying to Identify Thousands of PID Patients

If you’re lucky enough to find a job that you’re passionate about, it’s easy to see “work” as anything but. Still, love your job or not, it’s important to know…

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Here’s How This STAT1 Genetic Library Could Save Lives
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Here’s How This STAT1 Genetic Library Could Save Lives

The concept of a “library” is something we probably take for granted—but at its core, the library is one of humanity’s greatest innovations. The act of collecting information for the…

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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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Friends Aren’t a Cure, But Laughter is a Good Medicine for PI
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Friends Aren’t a Cure, But Laughter is a Good Medicine for PI

Primary Immunodeficiency (PI) can be very hard to explain to people and very hard to understand. The thing is, most of the time we look healthy on the outside. But…

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Got Primary Immunodeficiency? Get Out of Town in July, Teenager!
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Got Primary Immunodeficiency? Get Out of Town in July, Teenager!

Chances are if you have a primary immunodeficiency disorder, you don’t live near other teens with your same diagnosis. No one else gets what you’re going through. You may have…

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Editor’s Choice: IDF Sessions on CGD, IPF Progress and FDA Approval

Happy Friday Patient Worthians! You might notice that the headline has a lot of acronyms in it... ah, welcome to the rare disease world! We DO have answers for what all of that…

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Insurance Company’s Treatment of Immune Deficiency Patient Earns Them a Big Middle Finger
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Insurance Company’s Treatment of Immune Deficiency Patient Earns Them a Big Middle Finger

While the national conversation on healthcare has recently and rightly focused on the political debate over the Affordable Care Act’s future, it’s worth remembering what’s happening on the “street level”…

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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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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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Here’s Why You Should “Think Zebra!” Throughout April
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Here’s Why You Should “Think Zebra!” Throughout April

What do zebras have to do with primary immunodeficiency (PI)? Nothing and everything, it seems. Apparently, there’s a saying in medical school that goes: “When you hear hoof beats, think…

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Community Comes Together for Boy with CVID
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Community Comes Together for Boy with CVID

Let's be honest - watching the news today can be a little depressing. Whether it's political scandals, human rights crises, and the usual doom-and-gloom of war and dangerous world dictators,…

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