After around a 10-month hiatus, we are excited to announce that Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back in action with…
Ashley Colburn began losing her vision in childhood and became completely blind at fourteen years old. You see, Ashley has a rare inherited disorder called von Hippel-Landau syndrome (VHL),…
“I spent the majority of my life fearing the weight of VHL will eventually crush me, but thanks to this drug trial, not only do the rest of my fellow…
The VHL Alliance has just recognized Loyola Medicine as a new VHL Clinical Care Center. Von Hippel-Lindau (VHL) disease patients require multidisciplinary care for their complex and rare condition, and…
CURE® recently conducted an interview with von Hippel-Lindau (VHL) patient Joseph Heisler and his mother, Marirene. Joseph’s father was diagnosed thirty years ago with the genetic (inherited) disease. Shortly thereafter…
Research by three doctors provided a basis for tyrosine kinase inhibitors (TKI) and offered advancements in treatment for renal cell carcinoma (RCC) patients. Two such TKIs, sunitinib and sorafenib, remain…
A new Phase 2 clinical trial will begin this year to explore NKT2152 (a HIF2a-inhibitor) in combination with Fotivda/Tivozanib (a VEGFR tyrosine kinase inhibitor) as a treatment for relapsed/refractory clear…
According to a recent article, a new study shows a daily oral dose of Belzutifan may keep patients diagnosed with von Hippel-Lindau disease from needing surgery by shrinking tumors. Von…
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…
Merck has just received FDA approval for their recently acquired drug Welireg. This HIF-2α blocker is indicated for von Hippel-Lindau disease (VHL). This rare disease gives affected individuals a higher…
For nearly 130 years, pharmaceutical company Merck & Co ("Merck" or "MSD") has been working to develop unique therapeutic solutions for those with rare cancers and a variety of…
According to Ryan McDonald of Cure Today, the FDA recently granted Breakthrough Therapy Designation to MK-6482, an investigational HIF-2α inhibitor developed by Merck. The orally-administered drug, designed to treat…
Continued From Part Two Written by Payel Bhattacharya I hope for aid from the government to cover the high cost of subsequent medicines including anti-rejection medicines, radiological and lab…
Continued From Part One written by Payel Bhattacharya Pharmaceutical science has medications to control the pain. I was initially put on medicine but it mostly didn’t contain the pain. I…
By Payel Bhattacharya, living with von Hippel-Lindau syndrome I, Miss Payel Bhattacharya, was an unusual child. I was never concerned with petty things, the trivia, the dregs in life. My…
According to a story from Kractivist, 38 year old Payel Bhattacharya has the rare genetic disorder von Hippel-Lindau disease, or VHL. Payel has written a book about her life called A…
According to an article from the Augusta Free Press, a research team from Vanderbilt University and the Virginia Tech Carilion Research Institute has successfully managed to uncover the manner in…
When Kent Allen was told he had a year to live, he was hopeless. A year simply wasn't enough time. According to Waikato Times, over ten years ago, Kent was…
Dealing with a tragedy such as a brain tumor poses a great challenge to relationships. In this rare occurrence, a young couple from England were both diagnosed with a brain…
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