Two years ago, the Lazo family was shocked to learn that daughter Cassie, then seven, had cancer. She was diagnosed with Wilms’ tumor, a rare form of childhood kidney cancer…
An estimated 58 million people worldwide are living with Hepatitis C, a liver infection caused by the hepatitis C virus (HCV). This includes 3.9 million people living with chronic hepatitis…
When Tucker Krause was a young boy, his family noticed that he frequently got sick. More than frequently, even. In fact, when his mom really thinks about it, Tucker was…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
The American Society for Bone and Mineral Research (ASBMR) and Rare Bone Disease Alliance (RBDA) held the annual Symposium on Rare Bone Diseases this year on October 12. During…
Post-traumatic stress disorder (PTSD) is a mental health disorder triggered by experiencing a frightening, terrifying, and/or traumatic event. People living with PTSD often experience flashbacks and anxiety that can sometimes…
42o words (source - 2% match) vs. 479 words (mine - 1% match) Have you ever had a lingering itch? An itch that just wouldn't go away, no matter what…
On October 24, 2023, the Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. These webinars help provide updates to the rare disease community on legislation and other policy initiatives…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Aminosalicylates are a type of drug often used to manage inflammatory bowel diseases (IBD) like ulcerative colitis (UC). The Crohn's & Colitis Foundation explains that these therapies, which contain…
In the past, the U.S. Food and Drug Administration approved Voxzogo (vosoritide) for children with achondroplasia who were five years old or older. Voxzogo, developed by BioMarin Pharmaceutical, is…
A podcast titled Tasty Morsels of Critical Care, from Emergency Medicine Ireland, focused on hepatorenal syndrome in its 73rd episode. Typically, hepatorenal syndrome is an indicator of serious kidney damage, and…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
The xenotransplant involved transplanting Yucatan miniature pig kidneys into macaque monkeys with 69 genetic modifications. One monkey survived for over two years, offering hope to the team of Harvard…
The month of November is recognized around the world as Lung Cancer Awareness Month, a time to advocate and spread awareness about lung cancer. This form of cancer is not…
Only around 350 to 500 people in the United States are diagnosed with Creutzfeldt-Jakob disease (CJD) each year. Unfortunately, this disease often causes rapid cognitive decline and physical deterioration,…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
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…
Over the past 20-30 years, there have been changes in the way that the medical and scientific community views shaken baby syndrome (SBS). More recent research suggests that certain…
Receiving a rare disease diagnosis can be challenging. It can be even more challenging when there isn’t a lot of information to lean back on. While there has been…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
According to a report from Healio, a recent study evaluated the impact of diabetes on people living with multiple myeloma, a rare form of hematological cancer. The study indicated that…
According to a story from Healio, 21 people living with the disease prurigo nodularis took part in a qualitative study over the phone in which they shared the ways in…
Right now, there is an urgent need to identify and develop treatments for people with malignant gliomas, including glioblastoma. Unfortunately, there are limited effective treatment options; these cancers are…
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