Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
As we close out the month of March - it's important to give a little thought to some of the lesser-known rare diseases that are often overlooked. Bleeding disorders is…
Many people aren’t aware that even if they have their emergency medication with them, with instructions, that it may not be given to them. Their carefully labeled, lifesaving treatment could…
According to a late-summer press release sent out by the companies, two pharma players are joining forces and making waves in gene therapy for hemophilia A. Sangamo and Pfizer announce…
You may have heard someone say: “You don’t look sick.” Few phrases can be as disheartening to someone battling a lifelong, or chronic, illness. Blood diseases are just one such…
The Governor of Vermont made an official written proclamation March 3, 2017. He declared March as Bleeding Disorders Awareness Month, the state's first official observation of the cause. With this…
I came across an interesting blog about World Hemophilia Day (WHD) which was April 17th, 2017. It’s an interesting read, and fairly simple, one every woman should know about for inspiration,…
Were you into science at school? It’s funny, I never was, but I discovered a consuming interest in all facets of scientific discovery as an adult. Maybe I wasn’t encouraged…
Twenty-three teenagers living with rare diseases worked the runway at a recent fashion show in Texas. Sixteen-year-old Maggie, living with Von Willebrand disease, was one of the models for the…
I’ve had one hellofa tough day, but stopped abruptly with an attitude shift to feel inspired after reading an uplifting article which I know will inspire tons of moms in…
Has anyone ever called you one in a million? You took it as a compliment, no doubt. Maybe you saw this as someone saying that you’re special, you’re unique, you’re…
To read our primer on Hemophilia, click here. Pop quiz, Patient Worthy-style: What is von Willebrand Disease? And no Googling! For those who were familiar, A+! And for the rest…
It’s tough to be productive in our daily lives when anxiety and worry are dominating our thoughts, and if you or someone you love lives with aplastic anemia (AA), then…
Eventually, we reach a place in life where making a meaningful impact in the world becomes a motivating force. We know we’re there when we simply want to make something…
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…
“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…
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…
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…
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