Tuesday, February 28th is Rare Disease Day. And while we will be at #RDDNIH on the 27th, you can participate in Rare Disease Day from anywhere in the U.S.! Check out some…
This Friday, February third is The American Heart Association's National Wear Red Day® for women's heart health! It will mark the 15th anniversary since the inception of this fundraiser. According the…
Pharmaceutical companies Takeda and Ovid have agreed to work together to develop a new drug for rare pediatric epilepsies. The continued development of Takeda’s compound TAK-935 will be shared by…
Lying in bed this spectacularly beautiful fall Sunday morning—with my gently-snoring cat, Thelma, I feel so relaxed gazing out the window, watching ruby red leaves fluttering in the wind. But…
We want to celebrate our patient contributors and writers for their efforts in helping the rare community by bringing awareness, understanding and compassion to often neglected disease. The following article…
Si usted vive en Connecticut, y sucede que tiene una enfermedad rara, se están haciendo esfuerzos para ayudar a que su voz sea escuchada. Cuando usted es uno de muy…
Nice guys finish last? Hardly. Especially if we’re talking about Vanessa Smith, a mother of six, and Peter Brouwer, a father living with primary sclerosing cholangitis (PSC) who needed a…
Hold the phone! Hold. Wait. Uhhhh am I reading this right? There is a mom, who seems to have good intentions, a mom who clearly loves her young daughter who…
Tyrosinemia is an inherited metabolic disorder that inhibits the body’s ability to process or break down essential amino acids found in common foods that are consumed. Tyrosinemia Type 1 attacks…
The first MDS patient forum of 2017 is fast approaching! The forum is sponsored by the MDS Foundation is completely free for you! Just don't forget to register. The event…
I can honestly say that I have never gone to a doctor’s appointment and remembered everything I wanted to ask—not even when the appointment is the most basic of physicals.…
Meet Emily Deaton, de 21 años, de Mechanicsville, Virginia. Al igual que muchas personas con enfermedades invisibles, el viaje de Emily a un diagnóstico preciso era más de una pesadilla…
La enfermedad y la depresión. Con demasiada frecuencia, después de haber sido diagnosticado con una enfermedad crónica, los pacientes se dan por vencidos. Se retiran. Ellos dejan de intentarlo. Ellos…
Me encanta postres. Su "destacado" escrito al revés. Sólo hay algo para aliviar el de ser capaz de hundir sus dientes en algo dulce. Pero cuando se les diagnostica una…
Did you know that sickle cell disease occurs in one out of 150 Jamaican births? This is a very high risk of having SCD in comparison to African-Americans, where one…
Welcome back to Editor's Choice Patient Worthians! This week we have a story on some awesome rockers that are helping out the POTS community. We also have a sweet TEDx talk…
Here’s a story that serves as a sobering reminder of how genetic diseases can lay dormant and undetected for years, and how quickly they can come roaring to life… with…
Panuveitis refers to generalized inflammation of the uveal tract, the retina, and vitreous humor; in other words, all parts of the eye. Most cases have no known cause, but some…
After watching another YouTube video on fatty liver disease, I’m on a tear, specifically in addressing two types: First: Non-alcoholic fatty liver disease, which is also known as NAFLD and…
Are you a concerned parent or loved one of a child who has Juvenile Idiopathic Arthritis (JIA)? Well, you’ve come to the right place! I read such an uplifting online…
Es injusto, pero Hollywood cree que la narcolepsia es divertido. Una y otra vez, los personajes que sufren de este trastorno neurológico raro son retratados como bufones, cayendo la cara…
Whenever we’re struggling with something, we assume we are alone. We feel like we are the only ones. But in September of 1997, a small group of Friedreich’s ataxia (FA)…
When most people hear about scientists messing around with genetic manipulation, they think of the antagonist of a comic book trying to make super soldiers. But, that’s not what geneticists…
It’s always heartening to see scientists take up research in therapeutic areas that are under served and poorly understood. And when their research yields positive results, it’s downright amazing. Honestly,…
Are you living with primary sclerosing cholangitis (PSC) and looking for a suggestion on dietary improvements? If so, there may be help navigating your options (I know there are many). I…
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