If you don't know what it's like to live with dystonia, then you need to watch this Youtube video by Shawn Fairchild. A brave man living with dystonia, Fairchild shows…
There's good news for people living with Hereditary Angioedema (HAE), the genetic disorder that results in sudden and severe swelling basically anywhere throughout the body. As those living with HAE know,…
If you've got Fabry Disease and you live in Canada, you've GOT to check this out. If you don't have Fabry Disease, allow me to clue you in: It's a…
I discovered this neurologist, my current neurologist, through an occupational therapist who was trying to help me learn to live with whatever condition I had at the time, because I…
el blog de Honest Abe, un cajón de sastre sitio para juegos de video y la ciencia, ahora puede añadir campeón enfermedad rara con su descripción. El verdadero Honest Abe…
“Only the good die young.” “Live fast, die young, leave a good looking corpse.” “The idea is to die young as late as possible.” What do these three quotes have…
Happy Labor Day! I hope this Labor Day finds you well! Kick back, relax, and enjoy the fruits of your labor! While you do that be sure to send good…
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…
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…
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…
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…
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…
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…
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