In the United States, Orphan Drug designation comes with benefits and incentives such as fee waivers, tax credits, and up to seven years of market exclusivity if/when the drug is…
Our blood has different clotting factors, or protein, that helps clot and stop bleeding after injuries. But when you don't have enough of these proteins, the blood can't clot…
The 65th American Society of Hematology (ASH) Annual Meeting took place from December 10-13, 2022. During the meeting, stakeholders in the hematology field came together to discuss trends, research,…
Millions of people worldwide are affected by bleeding disorders such as hemophilia, von Willebrand disease (vWD), Glanzmann thrombasthenia, and more. In 1986, President Ronald Reagan sought to raise awareness around…
There are three subsets of Von Willebrand disease (vWD), a genetic bleeding disorder. Type 3 is considered to be the most severe form of vWD, culminating in intense or severe…
In a recent article for Hemophilia News Today, Jennifer Lynne, who is diagnosed with both von Willebrand disease and hemophilia B, stresses the importance of remembering women can have hemophilia…
A recent article showed how the parents of a little girl with the rare blood disorder Von Willebrand disease are spreading awareness about the importance of donating blood. Von Willebrand…
Jo Traunter was told that she was "a bleeder" throughout her life, whether it was by family, doctors, or others. She earned this title after living through decades of heavy…
According to a recent article, researchers reported their findings from a new study that looked at the bleeding patterns and characteristics in infants and toddlers with von Willebrand disease (VWD).…
When Nikki was growing up, she was plagued by frequent nosebleeds, and they weren't minor ones at that. They were serious and frequent enough to cause significant disruptions to her…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
As many patients in the rare disease community know, achieving a diagnosis can be a lengthy and difficult journey. Following this journey, it can still take a while to receive…
According to a story from hemophilia.org, the drug company Ferring Pharmaceuticals issued a recall of the nasal spray drug desmopressin (marketed as Stimate) on July 21st, 2020. This product is…
Many people use art, music, or writing to cope with events in their life. Personally, my platform is poetry; I love the way that I can use words to…
The most common inherited bleeding disorder, von Willebrand disease, appears more likely to cause problems for juvenile males living with the disease than juvenile females, according to a study…
According to a story from BioPortfolio, the drug company Octapharma USA sponsored the 71st Bleeding Disorder Conference, which is put on by the National Hemophilia Foundation. The company is also…
According to a June 20th report by the National Hemophila Foundation (NHF), the NHF along with several other prominent organizations in the bleeding disease community will be joining forces to…
2018 National Outreach for Von Willebrand Conference This event will be a chance for patients with Von Willebrand's disease to learn more about how to manage living with this disease…
Bruises. Ouchies. Boo Boos. Whatever you call them, injuries to the skin can happen anywhere on the body and can be caused by everything from vitamin deficiencies to a rare…
When it was “that time of the month” nearly everyone around me knew it. My parents knew that my snarky responses had less to do with my attitude and more…
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…
Really? Really. As if having one serious chronic disease isn’t enough, what makes God say, “Hmm…Let’s give this poor, innocent child, another chronic illness"?! In this case, I'm talking about…
When you think of a physical therapist, you typically think of a person that will help with treating injuries. Or you think of them a movement specialists. Surprisingly, physical therapists…
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…
Rare disease mom Bobbie recently had a new baby. While she is overjoyed at the latest addition to her family, she is fearing for her baby daughter's life. Her family…
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