von Hippel-Lindau Syndrome

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Rare Community Profiles: The Monster Inside: How a Boundary-Breaking Treatment Helped Sean in His Battle with von Hippel-Lindau Syndrome

Post author:Jessica Lynn
Post published:July 11, 2024
Post category:von Hippel-Lindau Syndrome

Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

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Patient Worthy’s Award-Winning Podcast Returns: Spotlight on Von Hippel-Lindau Disease

Post author:James Moore
Post published:October 18, 2023
Post category:von Hippel-Lindau Syndrome

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…

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VHL Patient Ashley Benefits from Treatment with Belzutifan

Post author:Jessica Lynn
Post published:January 18, 2023
Post category:von Hippel-Lindau Syndrome

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),…

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Von-Hippel Lindau Disease: Finding Hope in a Clinical Trial

Post author:Patient Worthy Contributor
Post published:December 16, 2022
Post category:Timely von Hippel-Lindau Syndrome

“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…

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A New Care Center for Von Hippel-Lindau Disease Has Been Named by the VHL Alliance

Post author:Trudy Horsting
Post published:April 20, 2022
Post category:von Hippel-Lindau Syndrome

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…

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A Discussion of von Hippel-Lindau Disease Thirty Years After Discovery

Post author:Rose Duesterwald
Post published:February 18, 2022
Post category:von Hippel-Lindau Syndrome

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…

Doctors Receive Nobel Prize for Development in Renal Cell Carcinoma Treatment

Post author:Rose Duesterwald
Post published:February 9, 2022
Post category:Renal Cell Carcinoma von Hippel-Lindau Syndrome

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…

Phase 2 Trial to Investigate Combination Treatment for Clear Cell RCC

Post author:Trudy Horsting
Post published:February 4, 2022
Post category:Renal Cell Carcinoma von Hippel-Lindau Syndrome

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…

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Belzutifan May Help Patients with Von Hippel-Lindau Disease

Post author:Alyssa Stevens
Post published:January 5, 2022
Post category:von Hippel-Lindau Syndrome

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…

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Rare Classroom: Von Hippel-Lindau Syndrome

Post author:James Moore
Post published:October 22, 2021
Post category:von Hippel-Lindau Syndrome

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…

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FDA Approves Welireg for von Hippel-Lindau Disease

Post author:Kendall Mason
Post published:August 30, 2021
Post category:Renal Cell Carcinoma von Hippel-Lindau Syndrome

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…

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Priority Review Granted for Belzutifan NDA for VHL-Associated RCC

Post author:Jessica Lynn
Post published:March 18, 2021
Post category:Renal Cell Carcinoma von Hippel-Lindau Syndrome

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…

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MK-6482 Receives Breakthrough Therapy Designation for VHL-Related RCC

Post author:Jessica Lynn
Post published:August 11, 2020
Post category:Renal Cell Carcinoma von Hippel-Lindau Syndrome

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…

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Warrior Princess: Fighting with a Rare Disease Under Unprecedented Circumstances, Part Three

Post author:Patient Worthy Contributor
Post published:May 7, 2020
Post category:von Hippel-Lindau Syndrome

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…

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Warrior Princess: Fighting a Rare Disease Under Unprecedented Circumstances, Part Two

Post author:Patient Worthy Contributor
Post published:May 6, 2020
Post category:Rare Disease von Hippel-Lindau Syndrome

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…

Warrior Princess: Fighting with a Rare Disease Under Unprecedented Circumstances, Part One

Post author:Patient Worthy Contributor
Post published:May 5, 2020
Post category:von Hippel-Lindau Syndrome

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…

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Author From India Talks About The Challenges of Von Hippel-Lindau Disease

Post author:James Moore
Post published:March 4, 2019
Post category:von Hippel-Lindau Syndrome

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…

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Recent Research Into The Nature of Von Hippel-Lindau Syndrome Could Be a Path To New Treatments

Post author:James Moore
Post published:March 30, 2018
Post category:Rare Disease von Hippel-Lindau Syndrome

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…

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Man with Rare Disease Was Given More Time to Live

Post author:Andres Rovira
Post published:October 26, 2017
Post category:Rare Disease von Hippel-Lindau Syndrome

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…

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UK Couple Battles Dual Brain Tumor Diagnoses

Post author:Andres Rovira
Post published:September 28, 2017
Post category:von Hippel-Lindau Syndrome

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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Rare Community Profiles: The Monster Inside: How a Boundary-Breaking Treatment Helped Sean in His Battle with von Hippel-Lindau Syndrome

Patient Worthy’s Award-Winning Podcast Returns: Spotlight on Von Hippel-Lindau Disease

VHL Patient Ashley Benefits from Treatment with Belzutifan

Von-Hippel Lindau Disease: Finding Hope in a Clinical Trial

A New Care Center for Von Hippel-Lindau Disease Has Been Named by the VHL Alliance

A Discussion of von Hippel-Lindau Disease Thirty Years After Discovery

Doctors Receive Nobel Prize for Development in Renal Cell Carcinoma Treatment

Phase 2 Trial to Investigate Combination Treatment for Clear Cell RCC

Belzutifan May Help Patients with Von Hippel-Lindau Disease

Rare Classroom: Von Hippel-Lindau Syndrome

FDA Approves Welireg for von Hippel-Lindau Disease

Priority Review Granted for Belzutifan NDA for VHL-Associated RCC

MK-6482 Receives Breakthrough Therapy Designation for VHL-Related RCC

Warrior Princess: Fighting with a Rare Disease Under Unprecedented Circumstances, Part Three

Warrior Princess: Fighting a Rare Disease Under Unprecedented Circumstances, Part Two

Warrior Princess: Fighting with a Rare Disease Under Unprecedented Circumstances, Part One

Author From India Talks About The Challenges of Von Hippel-Lindau Disease

Recent Research Into The Nature of Von Hippel-Lindau Syndrome Could Be a Path To New Treatments

Man with Rare Disease Was Given More Time to Live

UK Couple Battles Dual Brain Tumor Diagnoses

Metastatic Breast Cancer: Navigating Grief

Rethinking What It Means to Live With Acromegaly

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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