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),…
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…
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…
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…
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…
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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