Mycosis Fungoides (MF) is a rare form of lymphoma that affects usually affects the skin causing inflammation, tumors, plaques, and redness. It only affects 3 to 4 people in a…
Bernie Mac was a King of Comedy, but he was also living with sarcoidosis. April is sarcoidosis awareness month. What better time to honor one of the kings of comedy with…
He was suffering from the rare myelodysplastic syndrome (MDS) and fell victim to acute leukumia. The former executive director of Uganda Wildlife Authority (UWA), Moses Mapesa passed away on the morning of March…
Measuring Late-night Salivary Cortisol (LNSC) is an alternative to blood and urine for both research and diagnostic use. No wonder patients are opting for salivary cortisol testing over blood and…
OK... I hereby promise to never again make a blonde jokes. Why? Because two blonde sisters, Sam and Alex Kimura, are definitely no joke. They are a powerhouse of promise…
When Myasthenia Gravis is diagnosed in a child, it is called juvenile myasthenia gravis (JMG). But for 4 year old Julius Chatman, the diagnosis was ocular myasthenia gravis. A very rare case,…
Los tratamientos para enfermedades autoinflamatorias comúnmente requieren un paciente para recibir inyecciones debajo de la piel, lo que puede ser difícil si usted es el padre de un niño pequeño…
Life with narcolepsy can be fraught with daily challenges. Excessive daytime sleepiness, cataplexy, or other narcolepsy symptoms can interfere with daily life and activities and make concentration difficult. And for…
Congratulations to Accelmed, the equity investors, who backed SoniVie, a startup company based in Israel that's made a breakthrough treatment device for pulmonary arterial hypertension (PAH). Of course, we owe a…
First of all, what the heck is cataplexy? You may ask if you are unfamiliar the term. Cataplexy is what happens when a person suddenly loses all voluntary muscle control, and…
You may have heard the buzz words "gene therapy" without really understanding what it is, or what's at stake. Gene therapy is when a healthy copy of a gene replaces…
Rare Conect explica la vida de Annie Kwakkel que nació con cistinosis,una enfermedad genética que afecta aproxima a 1 en 100,00 a 200,000 recién nacidos en todo el mundo. Hoy…
Two university professors in Japan are working to make a difference in the lives of people who suffer from narcolepsy and cataplexy associated with narcolepsy. Dr. Hiroshi Nagase and his…
To the casual observer, one-year-old Thor Uran is a happy, healthy toddler with a winning smile and a shock of blond hair fitting for his super-heroic namesake. But Thor’s parents…
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…
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