Thrombocytopenia. The condition doesn’t sound so bad. Low Platelets. It seems as though you have a low savings. You can’t buy that Snickers bar, you have low platelets. You can’t…
Los médicos no siempre saben mejor. Eso es algo que cada padre cuyo hijo tiene una, enfermedad crónica rara entiende. Estos padres que aparecen en raras Conectar finalmente tuvieron un…
As humanity collectively slinks into the cold, dark days of winter, we could all use something to warm us up… or at least bring a small slice of sunshine. Well,…
I’m a skeptic-to-enraged lunatic when it comes to outlandish health claims. I land more squarely in the “enraged” arena when said outlandish claims play on the fears of people trying…
Nobody fights alone… or at least I hope so. And some individuals on an idiopathic pulmonary fibrosis (IPF) journey were sweetly reminded that there are others who walk with them…
The All of Us Research Program (The Program) at NIH is AWESOME. Here's what I learned at Rare Disease Day at NIH (#RDDNIH) and what you should know too, so…
Most parents have had their child fall asleep in an unusual place (think on the potty) at least once. But when it happens frequently, (during mealtimes, in the middle of…
At #RDDNIH, or Rare Disease Day at NIH, I was definitely troubled by a world map presented, that displayed emerging infectious diseases by region. Let's unpack this a little bit...…
If there is one thing clear at #RDDNIH, or Rare Disease Day at NIH, it's that there are amazing, brilliant people working hard for our community. The rare disease community…
Get informed and gear up for Rare Disease Week this Monday! Start with our Editor's Choice. This week we have a sweet story about a pup and how he helps…
If you’ve ever known someone waiting for an organ transplant, then you know what it’s like. They walk around with a beeper like a high school senior waits by the…
What would you do if you had a medical condition that required treatment that costs thousands of dollars a week? If nothing else, you’d reach your deductible in the first…
Here are some highlights of an inspirational article I'd like to share... Boehringer Ingelheim, a pharmaceutical company specializing in rare pulmonary diseases, headquartered in Germany, is stepping up to the…
One of my favorite scenes from Forrest Gump was the titular main character running across the United States. He got all kinds of press, as well as masses of people…
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…
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…
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…
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…
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