HEY KIDS! Are you tired of people not knowing about primary immunodeficiency? Take these 3 steps to teach others what PI means to you: First, THINK ZEBRA! What does that…
Most researchers like to say that their work is “groundbreaking” or “revolutionary.” And most reporters—whether print or digital—like to use those words too, because they help get people’s attention. But…
Do you consider yourself a happy person? Are you cheery all the time? Most of us are not, regardless of who we are or the conditions we may have—with or…
So, your child has just been diagnosed with common variable immunodeficiency, or CVID. You probably have A LOT of questions, which is only normal. Doctors can be a great resource when it…
Primary Immune Deficiency Diseases, or PIDDs, affect approximately half a million Americans, but there's a twist: There are over 200 different PIDDs, all of which are genetically passed along. Finding…
Health insurance. Ew, right? Totally. Health insurance is WHACK. Why you gotta know about health insurance right now? Mkay, I'm done with that. How was it, though? The lingo? Did I appeal…
Sometimes when we’re feeling low over the fact that there’s no cure for what ails people with combined variable immune deficiency (CVID), it’s hard to remember that doctors and scientists…
Looking for a good, concise description of common variable immune deficiency (CVID)? You could do a lot worse than to watch this video from the Children’s Hospital of Pittsburgh of…
Imagine, if you will, that you've just been diagnosed with common variable immune deficiency, or CVID. The doctor has answered your most basic questions, and now you're on your way…
World PI Week is coming up later this month, from April 22-29. So what better way to celebrate than to learn what exactly PI is! Not to be confused with Pi…
If there was one song that could get me poppin’ throughout my childhood, it would have to be “Parents Just Don’t Understand” by the Fresh Prince himself. Come on, you…
Raise your hand if you've called out sick from work or stayed home from school for something as simple as the common cold? Well, I'm just going to assume most of…
Cheryl Jackson lived most of her life not knowing why she was chronically ill. She had recurring sinus infections, bronchitis, and pneumonia. In her 40s she experienced GI issues that forced her…
I have two sisters, each with the remarkable talent to walk into a thrift store with only a few bucks and walk out with a brand new wardrobe. Growing up in…
It’s a terrible thing to lose someone. There’s no getting around that. But some people can take loss and find new purpose. For Eric Marder’s family, that purpose became Eric’s…
He descubierto que a través de todo esto, mi hijo ha empezado a preguntar, '¿Cómo puedo ayudar? ¿Que puedo hacer?' En cierto modo, esas son las mismas cosas que le…
Candace recogió sus cartas, lanzaron "Oceans" en el fondo, y apretó el juego cuando comenzó a grabar un video explicativo de su rara enfermedad con frecuencia mal entendida, de Inmunodeficiencia…
When the word came out that a sick baby was in need of a bone marrow transplant and no one in his family was a perfect match, students at Emily…
"I AM FEELING LIKE I MAY NOT EVER MAKE A DIFFERENCE." Through the power of the Internet (blogs, videos, message boards, or what have you) those living with rare diseases have the…
Every so often, actually more often then we'd like to think, the "suits" at health insurance companies sit down in their oak-lined board rooms and start flipping coins to see…
Soy Charlie, un joven de 27 años de edad, trabajando en marketing digital en Auckland, Nueva Zelanda. Soy un gran fan de un buen café, buena cerveza, buen vino, buena…
At PatientWorthy, we've talked a lot about gene therapy, but we've never really taken the time to explain it. What the heck is gene therapy? How does it work? Well, like…
A weakened immune system doesn’t have to stop the fun, that’s for sure. The Immune Deficiency Foundation will hold two Teen Escapes this summer— an awesome weekend away for teens…
A couple of months ago we took a look at the legacy of David Vetter, the “Boy in the Plastic Bubble” whose lifelong battle with Severe Combined Immunodeficiency (SCID) caught…
I am jumping for joy after learning there’s new hope for people in the CGD community! In October 2015, Horizon Pharma, headquartered in Dublin, Ireland, announced they will be opening…
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