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What is the prevalence of Von Hippel-Lindau Disease?

How many people does Von Hippel-Lindau Disease affect? Does it have the same prevalence in men and women? And in the different countries?

Prevalence of Von Hippel-Lindau Disease

Von Hippel-Lindau Disease (VHL) is a rare genetic disorder characterized by the development of tumors in various parts of the body. It affects approximately 1 in 36,000 individuals worldwide. VHL can manifest in multiple organs, including the brain, spinal cord, kidneys, adrenal glands, and pancreas. The condition is caused by mutations in the VHL gene, which is responsible for suppressing tumor growth. Early diagnosis and regular screenings are crucial for managing VHL and preventing complications.



Von Hippel-Lindau Disease (VHL) is a rare genetic disorder characterized by the development of tumors and cysts in various parts of the body. It is estimated to affect approximately 1 in 36,000 individuals worldwide.


VHL is an autosomal dominant condition, meaning that a person only needs to inherit one copy of the mutated gene from either parent to develop the disease. The prevalence of VHL can vary among different populations, but it is considered a relatively rare disorder.


The disease can manifest in multiple organs, including the brain, spinal cord, kidneys, adrenal glands, pancreas, and eyes. Symptoms and complications can vary widely depending on the location and size of the tumors or cysts.


Early diagnosis and regular monitoring are crucial for managing VHL and preventing potential complications. Genetic testing can help identify individuals at risk, allowing for proactive medical interventions.


While VHL is a rare condition, it is important to raise awareness about the disease and support affected individuals and their families in their journey.


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Prevalence of Von Hippel-Lindau Disease

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World map of Von Hippel-Lindau Disease

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Stories of Von Hippel-Lindau Disease

VON HIPPEL-LINDAU DISEASE STORIES
Von Hippel-Lindau Disease stories
I first found out I had VHL in 2007. I have always been healthy never broke a bone or been in the hospital never felt sick. I developed a tumor in my right kidney in late 2005. Doctors sugested removing the whole kidney and the cancer would be gone. ...
Von Hippel-Lindau Disease stories
Dear friends dont hide yourselves. We are a family vhlfa alliance.   Join us +6944969603 +2102711306
Von Hippel-Lindau Disease stories
My vhl experience begins around 12 yrs old. I woke up one day and was having blurry vision in my left eye. My mother took me to the eye doctor who sent me to a specialist. This Dr was fresh out of med school and I was one of his first patiants. He lo...
Von Hippel-Lindau Disease stories
At first my family thought we had pheochromocytoma, but when my cousin died NIH found out we had VHL. I was genetically tested in the fourth or fifth grade and do have the gene. My brother passed away from the disease, my mother has had numerous surg...
Von Hippel-Lindau Disease stories
My husband was diagnosed in 2004 with vhl has had double adreanalectomy kidney spine brain op and loss his sight due to vhl... 3 children also carry this gene and have had several operations and there also grandchildren as well 

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