I love sushi. I also love travelling to hot places who typically serve fish with higher instances of mercury. While I've always been aware that if you're trying to get…
The idea that a possibly life-altering medication is being denied to children is certainly something that will get the fires of the masses stoked. Imagine how inflamed the mob will…
Our fears are debilitating things that rob us of our energy, our dreams, and our opportunity for redemption. They are very much like rubber bands—flinging us back and forth. And…
Most people think of Parkinson’s Disease as something that only older people get. And while this perspective might hold true in most cases, there are quite a few people who…
Con enfermedades raras, hay mucha información que es desconocida o misteriosa para el público en general, los pacientes, e incluso los médicos. El síndrome de Ehlers-Danlos (EDS) es un grupo…
Most people have heard the term “rare disease,” but far fewer can name a rare disease let alone imagine what life might be like for those who have one. When…
When the human brain experiences a sudden disruption of blood flow, a type of paralysis called "hemiplegia" can result. Paralysis can occur on either the right or left side of…
If you are suffering from or caring for someone with Hemophilia B, then this event is for you. The 11th Annual Hemophilia B Symposium When: Fri, Mar 31, 20177:00am and Sun, Apr…
Most people who have heard of idiopathic pulmonary fibrosis (IPF), we probably imagine a grandparent with their oxygen tank on a little cart and nasal tubes hooked over his/her ears.…
In college, everyone loved the "Fall back" night of Daylight Savings Time. We got an extra hour of sleep and it was much needed considering we were likely celebrating Halloween the night…
It’s very possible that you have found yourself in a situation where you would have liked to improve somebody's mood, but you may not have known how to do it.…
No hace mucho tiempo, empecé a seguir una prensa sobre una adorable joven llamada, Maddie, de Lawndale, Carolina del Norte, que vive con la enfermedad de Behçet, y estoy encantada…
Have you ever heard the expression— “In for a dime, in for a dollar”? It basically means if a person commits to something, then he/she commits all the way. And…
When we do good, it feels good. Just like the efforts of the Kohn family and their event to raise awareness for Inflammatory Bowel Disease (IBD) and to appeal for…
Those of us with rare diseases like behcet's and fibromyalgia, that cause great pain, can often get frustrated and irritable because we try everything, do everything right, and yet we are still…
In these times of political uncertainty, when budgets are being slashed, and medical programs are being defunded without regard to the people who will ultimately suffer, I certainly hope that…
The main goal of any well-run camp program is making sure children have the time of their lives, and for one summer camp in Kentucky, their goal is to provide…
The Chinese musician cradled a guitar, the callused fingers of his left hand flying across frets, and the fingers of his right hand plucking and strumming. But on this Tuesday…
Kathryn es una esposa y madre de dos niños increíbles. Ella vive con síndrome de fiebre periódica idiopática indiferenciada, urticaria inducida por el frío y síndrome de taquicardia postural (POTS).…
I’m a firm believer in the fact that everyone has a story. Sure, the sentiment is a little corny. But that doesn’t make it any less true. That’s why I…
I recently lost a family member to idiopathic pulmonary fibrosis (IPF). She’d lived well with IPF for several years and physically well until the last six months. As you might…
His gums were bleeding. Can you imagine? Think about it—waking up one morning and your gums... are bleeding. I don't know about you, but I'd freak out. This stuff doesn't…
Researchers at a Japanese university are working to improve a drug that could treat a rare neurodegenerative disease called Niemann-Pick type C (NPC). The researchers observed a drug that has…
It sounds like a cliché to say that “becoming a parent changes everything.” Probably because it is a cliché. But as a parent, I know it also happens to be…
¿Por qué es todavía desconocida una enfermedad descubierta hace 127 años? No sólo eso, sino una enfermedad que afecta a 4 millones de personas en los Estados Unidos hoy! La…
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