Primary Immunodeficiencies – Page 3

SCID In the News

Post author:Patient Worthy Contributor
Post published:May 26, 2017
Post category:Primary Immunodeficiencies Rare Disease SCID

Want some more news, events and announcements on SCID? We got 'em! [one_half] [/one_half] [one_half_last] The Expense of Scientific Progress: The Price of Gene Therapy for SCID The…

https://pixabay.com/en/girl-happy-smile-woman-playful-1205254/

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

Post author:Trudy Horsting
Post published:May 24, 2017
Post category:CVID Primary Immunodeficiencies Rare Disease

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…

CGD In the News

Post author:Patient Worthy Contributor
Post published:May 23, 2017
Post category:CGD Primary Immunodeficiencies Rare Disease

Want some more news, events and announcements on CGD? We got 'em! [one_half] [/one_half] [one_half_last] Testing New CGD Treatments Just Got Easier [/one_half_last] [one_half] [/one_half] [one_half_last] The Most…

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

Post author:Patient Worthy Contributor
Post published:May 5, 2017
Post category:Batten Disease CGD Cystinosis Idiopathic Pulmonary Fibrosis IPF Primary Immunodeficiencies Rare Disease

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…

SCID at the IDF National Conference

Post author:Kathy Devanny
Post published:April 27, 2017
Post category:Primary Immunodeficiencies Rare Disease SCID

Remember when PW reported on the Newborn Screening and Gene therapy for the Immune Deficiency SCID? Well guess what our friends at the Immune Deficiency Foundation are doing? The IDF…

https://pixabay.com/en/denied-insurance-rejected-stamp-1936877/

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

Post author:Ronald Ledsen
Post published:April 26, 2017
Post category:Primary Immunodeficiencies Rare Disease

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”…

https://pixabay.com/en/chairs-conference-room-furniture-2181923/

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

Post author:Erica Zahn
Post published:April 25, 2017
Post category:Primary Immunodeficiencies Rare Disease Timely

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…

https://pixabay.com/en/adorable-animal-cat-cute-feline-1868563/

Pets and PI: Tips for Making It Work

Post author:Alexa Lee
Post published:April 21, 2017
Post category:Primary Immunodeficiencies Rare Disease

As a young girl, Joanna found a cat scared and stranded in a tree. Muffin became her first cat, and so began Joanna’s lifelong love of rescuing animals. But Joanna has…

https://pixabay.com/en/balloons-enge-squeeze-blue-green-2093272/

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

Post author:Erica Zahn
Post published:April 20, 2017
Post category:Primary Immunodeficiencies Rare Disease Timely

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…

https://pixabay.com/en/zebra-stripes-animal-ruminant-mane-701366/

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

Post author:Alexa Lee
Post published:April 17, 2017
Post category:Primary Immunodeficiencies Rare Disease

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…

https://pixabay.com/en/hands-world-map-global-earth-600497/

What Are You Doing for World PI Week?

Post author:Patient Worthy Contributor
Post published:April 17, 2017
Post category:CGD Primary Immunodeficiencies SCID

April 22nd through April 29th is World PI Week, dedicated to bringing awareness to Primary Immunodeficiencies (PI). If you want to participate, World PI Week has some great information for…

https://pixabay.com/en/handprints-hand-print-colourful-2856837/

Community Comes Together for Boy with CVID

Post author:Jean Martell
Post published:April 10, 2017
Post category:CVID Primary Immunodeficiencies Rare Disease

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,…

crystal710 / Pixabay

You Need to Tell Your Immunologist About These Conferences!

Post author:Erica Zahn
Post published:April 10, 2017
Post category:Primary Immunodeficiencies Rare Disease Timely

Clinical immunology is a biomedical branch of science that studies the immune systems of all living things, including people. It is through such studies that great advances in medicine have…

Source: www.pixabay.com

Eat Your Heart Out Dr. House: A Primary Immunodeficiency Mystery Solved

Post author:Al Pendleton
Post published:April 6, 2017
Post category:Primary Immunodeficiencies Rare Disease Timely

In a scene reminiscent of the wildly popular TV series House, real life medical researchers solved a PI mystery that plagued one family for over four decades. Members of this…

https://pixabay.com/en/alphabet-soup-letters-soup-eat-2034920/

The PI Low Down: What You Need to Know

Post author:Alexa Lee
Post published:April 3, 2017
Post category:Primary Immunodeficiencies Rare Disease

In reading about various diseases, I sometimes find that the content reads like alphabet soup. Sometimes, it’s helpful to simplify and clarify. To get down to the basics. April is…

https://pixabay.com/en/united-states-capitol-politics-1675539/

A Dangerous Consequence of the 21st Century Cures Act

Post author:Patient Worthy Contributor
Post published:March 14, 2017
Post category:Primary Immunodeficiencies

We are huge proponents of the 21st Century Cures Act, as it does so much for the rare community. However, there has been an unintended consequence of it's 2016 passing…

Cómo 2 segundos puede salvar la vida de un bebé

Post author:Jean Martell
Post published:March 6, 2017
Post category:Español Primary Immunodeficiencies Rare Disease

Doctor, por favor revise la sangre de mi bebé! La IDF alienta a los funcionarios estatales del estado de Louisiana a firmar en rutinas de detección de recién nacidos…

Source: Pixabay

¿Sabías que la terapia genética curó 18 bebés con SCID?

Post author:Jean Martell
Post published:March 5, 2017
Post category:Español Primary Immunodeficiencies Rare Disease SCID

La terapia genética se ha hablado desde hace bastante tiempo, pero las noticias recientes han convertido la esperanza en realidad para los bebés nacidos con adenosina desaminasa (ADA). Los bebés…

¿Qué tienen que ver cucharas con la enfermedad cronica?

Post author:Patient Worthy Contributor
Post published:March 2, 2017
Post category:Ankylosing Spondylitis CAPS CVID HAE Rare Disease

Al navegar a través de Tumblr o leer tweets, se ha preguntado alguna vez, "¿Qué es un spoonie?" Es el momento de averiguarlo. En primer lugar, un spoonie es…

Looking Back: This Mom’s Video Could Make CVID Awareness Go Viral

Post author:Rebekah
Post published:February 8, 2017
Post category:CVID Primary Immunodeficiencies Rare Disease

We want to celebrate our patient contributors and writers for their efforts in helping the rare community, bringing awareness, understanding and compassion to often neglected disease. The following article was originally…

Every pregnant woman should know about this SCID testing.

Lo que toda mujer embarazada debe saber sobre exámenes del recién nacido

Post author:Patient Worthy Contributor
Post published:February 2, 2017
Post category:Primary Immunodeficiencies Rare Disease SCID

Cuando me uní a otros millones de fans obsesionados que veían lo que ha sido la popular episodio "Bubble Boy" en Seinfeld en 1992, no tenía ni idea de que…

Source: pixabay.com

The “Mad” Science Making Mad Progress Toward a CGD Cure

Post author:Al Pendleton
Post published:January 26, 2017
Post category:CGD Primary Immunodeficiencies Timely

When most people hear about scientists messing around with genetic manipulation, they think of the antagonist of a comic book trying to make super soldiers. But, that’s not what geneticists…

[Source: pixabay.com]

Pint-Sized Help for Explaining CVID

Post author:Erica Zahn
Post published:January 18, 2017
Post category:CVID

If you are the parent of a child who has a rare disease, you know how difficult it can be to explain why they can and can't do certain things.…

Free-Photos / Pixabay

Esta pintura es mortal. Lo que necesitas saber.

Post author:Patient Worthy Contributor
Post published:January 13, 2017
Post category:CVID Primary Immunodeficiencies Rare Disease

Los hospitales son el germen de postrado, lugares infestados de bacterias. -especialmente las infecciones adquiridas en los hospitales infecciones por estafilococos, son conocidos por ser una causa principal de muerte…

Vea cómoa un médico experto le cambio la vida a este hombre

Post author:Patient Worthy Contributor
Post published:January 5, 2017
Post category:CVID Rare Disease

En esta cuenta, desde Philly.com, el Dr. Thomas Klein, alergólogo e inmunólogo, describe su problema. Un misterio se había encontrado en su camino que no se creía capaz de resolver.…

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SCID In the News

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

CGD In the News

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

SCID at the IDF National Conference

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

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

Pets and PI: Tips for Making It Work

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

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

What Are You Doing for World PI Week?

Community Comes Together for Boy with CVID

You Need to Tell Your Immunologist About These Conferences!

Eat Your Heart Out Dr. House: A Primary Immunodeficiency Mystery Solved

The PI Low Down: What You Need to Know

A Dangerous Consequence of the 21st Century Cures Act

Cómo 2 segundos puede salvar la vida de un bebé

¿Sabías que la terapia genética curó 18 bebés con SCID?

¿Qué tienen que ver cucharas con la enfermedad cronica?

Looking Back: This Mom’s Video Could Make CVID Awareness Go Viral

Lo que toda mujer embarazada debe saber sobre exámenes del recién nacido

The “Mad” Science Making Mad Progress Toward a CGD Cure

Pint-Sized Help for Explaining CVID

Esta pintura es mortal. Lo que necesitas saber.

Vea cómoa un médico experto le cambio la vida a este hombre

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Rethinking What It Means to Live With Acromegaly

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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