A urea cycle disorder occurs when the body can't break down the ammonia that amino acids produce. Unchecked, ammonia is toxic. According to the National Urea Cycle Disorders Foundation, there…
I cannot get enough inspiration from Moms and Dads who are heroically trying to find answers when their children are sick—and doctors are scratching their heads! I read about a…
Ya know that “I’ve Fallen & I Can’t Get Up" joke? When you have postural tachycardia syndrome (POTS), jokes like that wear thin really, really, REALLY fast. What is POTS? Have…
Si usted o su ser querido está viviendo con una enfermedad crónica rara, probablemente ha pasado por las diversas etapas del duelo: negación, ira, depresión, negociación, y es de esperar…
Eventually, we reach a place in life where making a meaningful impact in the world becomes a motivating force. We know we’re there when we simply want to make something…
If you suffer from complex regional pain syndrome, or CRPS, you know the value of effective pain management--because without it, life kind of grinds to a halt. Unfortunately, many of…
Child development is natural and to be expected. Parents look forward to these milestone moments and usually remember every detail from these times. First word. First steps. One after the…
Mast cells are produced by bone marrow and are part of all tissues in the body. They are regulators of the immune system that contain storage sacs that contain active…
"Me gustaría que la gente simplemente tomar cinco minutos para buscar el síndrome de Ehlers-Danlos para crear conciencia." Estas son las palabras de 15 años de edad, Mya Lilly Hurst,…
If you are considering having children, it’s wise to consult with a genetic counselor for screening and testing before conception. Here’s why: there is a plethora of deadly and/or seriously…
Life can be overwhelming, especially when living with complex regional pain syndrome (CRPS). The continual pressure to look good, to perform well, and to compete for wealth and affection creates…
When a fetus inherits a mutated copy of the TFAP2B gene, the development of the heart, face and arms and legs is affected. As a result, when the infant is…
Si usted o su ser querido está viviendo con hipercolesterolemia familiar homocigota (HFH), que va a estar encantados con esta noticia - y se lo merece, también! La Fundación Defensor…
Cuando la mamá de Hagan dice a los 12 meses de edad, muchacho irlandés que él es uno en un millón, no es broma - y que no es exactamente…
Comprensión de la fibrosis quística (FQ) ha, afortunadamente, recorrido un largo camino desde sus primeras descripciones de niños que son "Embrujada" o "hechizado", porque su sudor sabor de la sal.…
Who is excited for another long weekend coming up this Monday?! To kick off your three-day weekend, take a look at these intriguing stories... Researchers have identified a superbug that…
Has your physical therapist been suggesting standing like a superhero as a cortisol-lowering treatment for your complex regional pain syndrome (CRPS)? Well, s/he might just be slumping her or his…
The death of a loved one is no doubt one of the most painful experiences in life. The grief, the confusion, and the emptiness that follows can sometimes feel unbearable.…
“Motherhood is the hardest job you’ll ever love.” I’m not sure who first coined that phrase, but its truth becomes clearer to me every day. And nowhere is that truth…
You may hate that these days everything seems to turn pink for the whole month of October. Or you may appreciate efforts to associate the color pink with Breast Cancer…
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…
Science has a Little Engine That Could story that you may want to check out. It makes for a pretty dense read, but once you wade through the data, the…
This past December, the United States Congress was temporarily struck by a moment of bipartisanship when it passed the 21st Century Cures Bill. The bill, which President Obama signed into…
Man, I’m not so sure that I believe in angels, but my heart is overjoyed whenever I hear about strangers who’ve donated ANYTHING to help ANYBODY! With aplastic anemia—depending on…
It has been said that there is strength in numbers, and we are much stronger together! That’s probably why I connected with Shira Strongin, a young teen who lives with…
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