Fabry disease results from deficient activity of alpha-galactosidase A (a-GAL A). Bless you. What? That's an enzyme which breaks down complex sugar-lipid molecules called glycolipids. When the body can't break…
Labor Day, devoted to no man or woman, celebrates all of us and our pursuit of happiness and the American Dream. There are some out there who suffer illnesses, whether…
On November 12, 2016, Present Troubles Racing will host their Hills and Hollers Half Marathon & 5K, which is intended to raise awareness about amyloidosis and funds to help support those affected…
Wanna know one GOOD thing about having a chronic illness like hemophilia? It can help you get a scholarship that might just change your life! When you have a chronic…
Kathy Antilla recuerda el momento en que escuchó a su hijo, Isaac, decir esas palabras que ella pensó que nunca oiría: "¡Mamá! ¡Mírame! Soy como un niño normal ahora." En…
Happy Labor Day Weekend Patient Worthians! We hope you can spend this weekend's extra time with friends and family while gearing up for fall! This week we have a post…
Gene therapy is the hot new thing in medicine these days--especially with hemophilia. The good new is, “Yay! There are hot new things in medicine exciting researchers!” The bad news…
According to the history of Labor Day, this day is dedicated to those who add to the strength, prosperity and well being of this country. I say double kudos to…
Calling all kind and generous people living near Ilminster in the UK! On August 28, Zellweger UK and the Epilepsy Society raised money AND watched a lovely lady get her…
Optic neuromyelitis, also known as Devic's disease, is a rare disorder that affects the eyes and spinal cord. It occurs in approximately one in five out of 100,000 people, and…
21 de de julio de, 2015: El gigante farmacéutico, Amgen, fue galardonado con una impresionante aprobación de la Comisión Europea para Repatha, un fármaco reductor del colesterol avance según lo…
When I see a rubber boat and a headline with “boy” in it, I freeze. Can I bear to see another heartbreaking story on refugees in need of help? Thankfully, this was…
Like a lot of overweight young adults, I struggled with weight for pretty much my whole life. My mom always tried to get me to eat better and I pretty…
Ahh Labor Day, the day where we all take the day off to relax and spend time with friends, family and fellow laborers (ff you're lucky enough to work somewhere…
Learning more about your rare disease, like PAH (pulmonary arterial hypertension), can be confusing. Do you find a small support group? A big event? Do they even have those? Yes,…
My name is Nolan,and I'm from Virginia Beach, Virginia. At this time the dystonia will effect just about anything that I do, but my one true passion is running. I…
Dan Giancola está a punto de tomar el viaje de esta vida. Literalmente. detalla el St. Catharine's Standard su misión de recaudar más de $ 100,000 para Abbi, una niña…
This November, citizens of Montana will have something very important to vote on—besides who will be the leader of our country, of course. So, what exactly are they voting on?…
A support system, a family member, a significant other, a friend, can mean so much and knowing that there others out there who are going through the same thing, however…
Breastfeeding is a pretty loaded topic in the world of moms. There’s a certain pressure to breastfeed since research suggests it’s better for your baby and what mom doesn’t want…
¿Sabe usted quién es Maree McRae? Si no lo hace, leer su entrevista en profundidad apareció en HollywoodtheWriteWay.com. Estos son los puntos de la bala: McRae es un cantante /…
On June 1, 2011, a patient diagnosed with myasthenia gravis (MG) died after falling in Wellington Regional Hospital in New Zealand. Those are the basic facts, but behind this tragedy…
One of the most frustrating parts of having a rare disease is getting the dang diagnosis in the first place. We've all heard the garbage excuses before: "It's all in…
There's no doubt that living with a chronic illness is difficult. There may be certain things you can't do and activities you can enjoy. Even so, if you let that…
Few topics in medicine are as fraught with controversy as medical marijuana. Decades of debate over the harmful effects of recreational marijuana use—to mention nothing of its depiction in popular…
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