Right up front, I'll admit I’ve done this: You’re in a parking lot looking for a parking space when you pass a handicapped spot. You see the placard that gives…
Hema Biologics have recently released something even cooler and more inventive than just their traditional hemophilia treatments. They are way on top of their game and know exactly how to…
Happy Friday! This week, we have a story that might break your heart about a woman who battled cystic fibrosis. But we also have a story that might inspire you about a…
Most things have multiple functions. The tire iron you use to jack up the car when changing a flat tire? It can be used as a self-defense weapon if an…
August signifies the beginning of the end of the summer season and the start of school again, but it is also a month of spreading awareness. Specifically, gastroparesis awareness. Gastroparesis is…
So I don’t think it will surprise anyone to learn that people living with mental illnesses like schizophrenia or bipolar disorder have to put up with a huge ration of…
Don’t eat that! Eat this instead. Some diets recommend low fat. Some endorse high protein. Some forbid carbohydrates. Some praise those same carbohydrates. Some limit fiber. It’s so confusing figuring…
The latest in Waldenstrom macroglobulinemia news comes not only from the hospital clinic, but also from the race track, and the dance floor! As for the former, latest results are…
Happy August Patient Worthy Peeps! This week, we have some awesome posts to keep you up-to-date on some of the latest rare disease developments. There's news on a hopeful possible…
This is not a warning, but some friendly advice: Start planning for next year and mark your calendar for February 28, 2018—it’s world Rare Disease Day! It’s the day that…
If you’re a science nerd, we live in some pretty exciting times. Even though we’re going through a moment where it feels like science and empirical evidence itself is under…
As rare, neurodegenerative diseases go, amyotrophic lateral sclerosis—or ALS—“enjoys” an unusually high profile. This is due in no small part to both the ice bucket challenge that was everywhere a…
While multiple myeloma treatment has made significant advances in recent years, the prospect of a cure remains as elusive as ever—just as it does for all cancers. But that may…
A little thing called "genomic technology" could just be a game changer for people who suffer from idiopathic pulmonary fibrosis (IPF.) What is genomic technology? Glad you asked. Genomics is…
We’ve all been there. In the grocery store or at the mall or at the amusement park, when a child starts to act out, much to the chagrin of the…
There’s a lot that the marginal zone lymphoma community needs, but there is also a lot being said. Results from clinical trials are coming in, and patient testimonials are shedding…
Our nation's public health centers are the unsung heroes of health care. Each year, more than 9,000 health centers around the U.S. serve over 25 million Americans, including 300,000 veterans,…
There's a lot happening in the cystic fibrosis world, so here's the latest scoop. Cystic fibrosis (CF) is a genetic disease that causes progressive and constant lung infections as well as…
What do you think of when you hear the word “family?” You may consider your parents, siblings, grandparents, aunts, and uncles. No matter whom you include, we all share one…
Dogs have been helping humans for centuries. As early as the mid-1700s, dogs were being used by the blind as guides. In 1929, The Seeing Eye, the first guide dog…
Welcome Back to Editor's Choice! The end of the week is finally here, and we have some reading material for you. First, we have an awesome story of a CF…
Comic Demetri Martin likes to point out that worms and bears don’t have much in common until you think about gummy. Then, the similarities become clear. What Martin is pointing…
These days there is an app for everything. There's an app for how to cook a nice meal. An app to remind you to meditate. Countless apps for finding your…
The United States' Orphan Drug Act (ODA) was enacted in 1983. Years later, it has failed to fuel the creation of orphan drugs to treat rare diseases, including spinal muscular…
When my son was born he didn't exhibit primary immunodeficiency (PI) or any of the other conditions on the newborn screening panel. Still, I fretted over just about everything. He…
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