Why is non-adherence still a problem for many hemophilia patients? There’s a very simple answer here: it’s because hemophilia can be difficult to manage and hard to live with. There’s…
We often hear the term noncompliance when talking about patient-doctor relationships for individuals with hemophilia. In essence, it means the hemophilia patient hasn’t done what the doctor has asked them…
In the Victorian period, the British Royal family was known to carry haemophilia, leading to the condition also being known as ‘the royal disease’. Now, no members of the British…
According to a story from eurekalert.org, a recent test study suggests that patients with hemophilia B could be treated with just a single injection over the course of their lives.…
United in Progress is the tag line for a unique collaborative effort to speed progress in identifying, understanding and treating hemophilia: My Life Our Future. Increasingly in the area of rare…
According to a story from the National Hemophilia Foundation, the pharmaceutical company Novo Nordisk announced that its product REBINYN was now available for hemophilia B patients. The treatment is intended…
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…
A huge deal is underway as Sanofi looks to acquire Bioverativ for $11.6 billion with hope to enhance and strength their rare disease presence, reports Genetic Engineering & Biotechnology News.…
Pharmaceutical company and gene therapy leader, uniQure, published promising data from their current phase I/II trial testing out a gene therapy called AMT-060 in patients with serious cases of hemophilia B.…
A perfectly coifed woman-child cuts you off on the way to the YMCA. Your children are copping some major attitude. Your spouse forgets to grab milk for dinner. Do you…
Patient Worthy attended the National Hemophilia Foundation's 69th Annual meeting in Chicago and we are thrilled to report on some of the exciting new developments for patients with bleeding disorders.…
Gene therapy is rapidly shaping up to be the next stage in the evolution of treatment for a wide array of conditions. And it makes sense: rather than treat the…
Hema Biologics have recently released something even cooler and more inventive than just their traditional hemophilia treatments. They are way on top of their game and know exactly how to…
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…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
