We take most of our daily activities for granted. From working out at the gym to having our teeth cleaned, but for people living with hemophilia B what most people…
Want some more news, events and announcements on hemophilia? We got 'em! [one_half] [/one_half] [one_half_last] FDA Clears New Drug for Hemophilia B Treatment Virtual-reality Game Helps This Boy…
Let's talk about Mount Everest. It sits on the border between Nepal and China and its peak is 29,029 feet above sea level--which makes it the highest mountain on earth.…
There are few things more frightening and horrifying for a new parent than being told that their child has a lifelong medical disorder. Perhaps the only words that could make…
Happy Friday Patient Worthians! April is Sjogren's Awareness Month! There was also a whole day dedicated to Bohring-Opitz Syndrome. The MDS Foundation has another upcoming event as well. Lastly, last month…
Royalty, murder, lots and lots of blood – sounds like elements from the plot of a Victorian-era thriller. Actually, this story comes straight from hemophilia history. Science Magazine published a…
Welcome back to Editor's Choice! This week we have an interesting take on Parkinson's treatment. We also have an empowering article from one of PW's rare disease contributors. We are all feeling the…
The key to solving ANY problem is knowledge. And so the same goes for raising awareness for those living with any type of illness. The more we know about the…
If you are suffering from or caring for someone with Hemophilia B, then this event is for you. The 11th Annual Hemophilia B Symposium When: Fri, Mar 31, 20177:00am and Sun, Apr…
Frustration. It winds you up and can take so much out of you. Not only does it suck energy, but it also distracts and can steal quite a bit of time.…
Shocker! Did you know it’s possible to acquire hemophilia? There’s a professor who I’m obsessed with from Texas—that would be “obsessed” as in a healthy obsession! And here’s why: He…
Happy Friday Patient Worthians! PW Contributor Nolan is back in our Video Series with his details on dystonia treatment. We also have some cool info on EDS gadgets! What do pharmaceutical companies mean…
Pharmaceutical marketing can often be a very big, very sharp double-edged sword. In order to make drugs and stay in business, pharmaceutical companies have to speak to their audience, which…
“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…
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…
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…
Welcome to this week's Editor's Choice! We hope that those of you who are having a back-to-school week, are smooth sailing! This week, we have some news on IPF and hemophilia…
A cure may be just around the corner for people who have hemophilia B. And anytime the word "cure" appears in a sentence with a disease state, there's cause for…
We get it. There’s nothing cute about a medical ID bracelet. But if you’re someone living with a rare condition like hemophilia, it becomes less a fashion accessory, and more…
While it wouldn’t be fair to describe hemophilia B as the red-headed stepchild of the bleeding disorder community, it is far rarer than the more common hemophilia A, and bleeds…
Shari Bender’s life didn’t exactly turn out the way she planned, but in reality, whose ever does? Bender’s daughter was born with hemophilia, a bleeding disorder that changed the lives…
Channel your inner Mickey and put those big ears to the ground! What’s that you hear? Why, it’s the sound of a whole lotta cutting-edge, exciting resources from the hemophilia community heading to…
Have a rare disease? Have you ever been to a national patient conference? These are invaluable opportunities to connect with others who share your challenges and concerns! Imagine being in…
I recently read an interesting article about a new drug for hemophilia B called: Idelvion [Coagulation Factor IX (Recombinant), Albumin Fusion Protein] which I highly recommend that you read. It…
I recently read an article about Hemophilia A and B from the Cleveland Clinic. I thought it was incredibly helpful because, sometimes, I get confused about the differences between the…
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