Major breakthrough alert! Scientists have developed a method to test the sweat of infants to detect cystic fibrosis (CF). CF is an inherited disorder that causes severe damage to the…
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…
In late July of this year, biopharmaceutical company, Incyte, announced that the very first treatment in a Phase 3 clinical trial for itacitinib had been administered for an acute graft-versus-host…
I wouldn’t exactly call myself a meditation guru. I was first introduced to the concept of meditation after a class on Buddhism in college. I attempted to mediate for several…
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…
Constipation. It's not the first symptom you think of when considering the effects of Parkinson's Disease (PD). Tremors, rigidity, insomnia, and depression are all well-known symptoms of PD. Constipation? Not…
Have you ever noticed how frequently things get compared to the same small group of ideas? When trying to point out that something isn’t as complex as it appears, you…
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…
Although there are treatments currently available with a proven track record against rare types of cancers, such as Waldenstrom macroglobulinemia, with any treatment, however successful, there will be a handful…
It's hard to believe it's already been about a month since the hemophilia A community received this exciting news! In case you missed it, there's a new drug that got…
Genetic engineering has, for a long time, been a highly heated and contested issue. One must weigh the ethical ramifications and risks of engineering human embryos with the huge potential…
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…
In the mid-1990s, many in the United States were first exposed to the somewhat strange juxtaposition of choreographed leg flailing and still upper bodies. This was, of course, Riverdance. This…
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…
A recent study found that a specific bacteria may be the distinguishing factor between cardiac sarcoidosis and other conditions that affect the heart. This data suggests that this bacteria may…
They say, “Necessity is the mother of invention.” This maxim goes for everything from nuclear technology (the Manhattan Project was a direct result of World War II) to the Snuggie®…
There’s a lot happening in the adrenoleukodystrophy (ALD) world, so here’s the latest scoop. Adrenoleukodystrophy, or ALD for short, is a genetic rare disease that destroys the protective sheath surrounding…
In late July of this year, the results from a scientific preclinical trial were published in which a research team in Europe discovered initial signs that could pave the way…
Do you remember the "Heartbreak of Psoriasis"? Back in the '60s, some Mad Men came up with that catchy campaign to sell a "new healing discovery" that could clear up…
The U.S. FDA just granted breakthrough therapy designation to a new mantle cell lymphoma treatment called acalabrutinib! This drug is specifically for people who have already gone through at least…
Klippel-Feil Syndrome Awareness Day began five years ago, when a small group of people decided a specific day each year should be set aside, to help the KFS community speak…
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