When I was pregnant with my second child, I knew it would be different. We had all the essentials from having my daughter a few years earlier, and advice from…
Rare disease patients remain one of the most underserved medical populations, and they often have to deal with debilitating symptoms or complications that can make daily life difficult. For example,…
Happy Friday, Patient Worthians! This week we have articles about people working together on different types of rare disease teams. We have stories from a family who supports two children…
Welcome back, Patient Worthians! We're starting out the new year with stories of strength and awareness. This week, we have an article about a man with CSF leak, whose life…
Happy New Years, Patient Worthians! New year, new you... new treatment news? This week, we have an article about a molecule that could change the way we treat cystic fibrosis.…
Happy Holidays, Patient Worthians! As we celebrate the holidays this year, we take a moment to reflect on the things that matter most deeply to us. This week, we have…
Chronic granulomatous disease (CGD) is a rare inherited primary immunodeficiency disorder that impairs the body’s ability to kill certain bacteria and fungi. As a result, people with CGD are at…
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…
Hey, do you guys remember that Mark Wahlberg movie that came out not long ago? You know, the one where he’s a cop? No no, not that one. The serious…
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…
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…
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…
A special session on CGD will be presented at the 2017 IDF National conference. CGD is a primary immunodeficieny disease and is characterized by skin infections, both fungal and bacterial,…
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…
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…
Chronic granulomatous disease (CGD) is a genetic condition that affects the immune system. It's in the family of primary immuno-deficiencies, and makes it hard for the body to fight infections…
Cuando se tiene una enfermedad rara como la enfermedad granulomatosa crónica (EGC) y has pasado la mayor parte de tu vida siendo pinchado y cortado por los (esperemos) médicos bien…
No es común que las enfermedades raras cruce con la cultura pop, pero cuando lo hacen, vale la pena sintonizar. Este verano, espectáculo de Lifetime Television, "The Balancing Act", contó…
2015 Conferencia Nacional de la FDI se acerca rápidamente! Durante 3 días, Louisiana dará la bienvenida a las FDI y todos sus componentes y colaboradores. A partir del jueves, de…
Les dijimos por qué la conferencia de este año iba a ser muy emocionante en nuestro anterior post, 2 razones por las que la Conferencia Nacional 2015 IDF es aún…
Conozca a TZ la cebra del FDI! #namethezebra Os contamos la conferencia de este año iba a ser muy emocionante en nuestro anterior post, 2 razones por las que la…
There are 250+ PI Disorders Out There Primary immunodeficiency disorders were once shrouded in misinformation and a general lack of understanding. Many would argue that this is still true today…
Children’s books have a way of staying with you. My mom used to read to me all the time growing up. Just about every night before bed, she’d grab a…
Chronic granulomatous disorder, or CGD, is an inherited immune disorder where certain cells (called phagocytes) are unable fight bacteria and fungi. Symptoms include swollen lymph nodes, pus-filled bumps beneath the…
Living and Traveling with Primary Immunodeficiency Okay, just because you’re living with Primary Immunodeficiency (PI), doesn’t mean that you’ve got to be a little wall flower or confine yourself to…
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