Back in the 1975, the movie Jaws came out right before the summer season began. The movie posters showed the gaping open mouth of a Great White shark with a…
Anyone who’s lived with narcolepsy knows how tough it can be to find other people who can relate to what they’re going through. The folks at the Narcolepsy Network know…
Recently I read an interesting article about a new med that’s been shown to speed the production of blood platelets by as much as 40% which could potentially improve the…
Oh Canadá, la gente piensa que eres todo "por favor y gracias", y el jarabe de arce, pero conozco la verdad: Eres un luchador y esa lucha es más evidente…
April 15th marks the deadline for the FDA to approve or deny approval for Mycapssa, a drug created by biotech company Chiasma. Mycapssa is pending approval for the treatment of…
In this election year, a good way to practice being politically active is to write a letter supporting a bill with the catchy name Orphan Product Extensions Now, Accelerating Cures and…
What would you do if you were alone at work or on the street or at home and you fainted? What if it happened frequently because you had a…
You’ve probably heard the saying, “the journey of a thousand miles begins with a single step.” That’s very true, but it’s also true that getting to that first step can…
When talking about genetic diseases, rare and otherwise, it helps to know a little bit about genetics. Every person's body has thousands of genes that are responsible for generating proteins…
[I ]took a deep breath and fell into a deep sleep. Little did I know, I would stay asleep for a month and a half. Welcome to the blog of…
Von Willebrand disease, or VWD, affects about 1% of the American population, but until recently, there was no dedicated therapy to treat it. If you're unfamiliar with this rare disease, VWD…
Podría ser una historia de una novela de espías: Si bien se están pasando mensajes codificados, un extraño intenta infiltrarse e interrumpir la comunicación. Parte de la misión involucra el…
Did you know there are dos (that's Spanish for "two") forms of narcolepsy? Yep! Type 1. Type 2. Very similar in truth. Both involve excessive sleepiness. What distinguishes the types is…
When Julie Flygare was diagnosed with narcolepsy eight years ago, she had no idea what would transpire in her life as a result. She realized that very few people understood…
Abdulatif al-Jasem's family was fleeing the violence in Syria when the seven-year-old began bleeding heavily. Just as they were about to make their escape on a smuggler's boat, the other…
When British father Matthew Parkes took his wife Pamela and daughter Sophia on an anniversary holiday to Majorca, Spain last year, he got much more than he'd ever bargained for.…
Bueno, la gente en la Comunidad de la fibrosis quística, escuchen! Un nuevo tratamiento dirigido para la fibrosis quística (FQ) puede estar en el horizonte antes vs después, y estoy…
What makes a young boy’s eyes light up? What makes him shuffle his feet with excitement or smile from ear to ear? One would think it would be a new…
I have two sisters, each with the remarkable talent to walk into a thrift store with only a few bucks and walk out with a brand new wardrobe. Growing up in…
When I walked in to Rare Disease Day 2016 at NIH, the atmosphere was full of hope, on a scientific level, legislative level and patient level. And I'm not just…
For many doctors, Castleman disease seems impenetrable. Not only is the disease incredibly rare (only affecting maybe 30,000 people in the United States), its innocuous smattering of symptoms are easily…
What would you do if you were told that your six-month-old daughter had a rare genetic disorder and wouldn't live past a year? Would you: A. Cry hysterically B. Punch…
Amyloidosis is a rare disease that affects organs such as the heart, kidney, liver, the nervous system and more. While there is no cure, there are treatments and organizations that can help. Enter,…
Have you ever heard of "syncope?" First of all, it's pronounced SING-co-pee, and you're not alone if the term is new to you. Syncope is thought to be responsible for a…
Kids. They may not be known as the most trustworthy of folk, but more and more people are saying it’s imperative to believe kids, especially when they say they’re in…
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