vhl alliance

What is VHL?

Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in up to 10 parts of the body. It is caused by a flaw in one gene, the VHL gene, which regulates cell growth causing patients to battle a series of tumors throughout their life.

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I have VHL. What can I do?

See the many activities and opportunities for learning and connecting with others dealing with VHL, whether they be patients, family members, caregivers, or friends.

patients section »

Resources for Professionals

The VHL Alliance is a major resource for VHL diagnosis, screening and treatment. The “Professionals” section contains a wealth of information for health professionals seeking to know more about von Hippel-Lindau disease.

professionals section »

Research

The VHL Alliance is a leading funder of VHL research with over $1.5 million granted to support studies designed to find a cure. While these funds have not yet uncovered an effective pharmacological treatment for VHL, the supported research has resulted in approval of multiple cancer drugs for other cancers including kidney and breast cancers.

 

 

research section »

I want to help.

It is only though the generosity of our supporters and our volunteers that we can offer so many different programs. We are asking you to join us and continue your support.

get involved »

What is VHL?

Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in up to 10 parts of the body. It is caused by a flaw in one gene, the VHL gene, which regulates cell growth causing patients to battle a series of tumors throughout their life.

I have VHL. What can I do?

See the many activities and opportunities for learning and connecting with others dealing with VHL, whether they be patients, family members, caregivers, or friends.

Resources for Professionals

The VHL Alliance is a major resource for VHL diagnosis, screening and treatment. The “Professionals” section contains a wealth of information for health professionals seeking to know more about von Hippel-Lindau disease.

Research

The VHL Alliance is a leading funder of VHL research with over $1.5 million granted to support studies designed to find a cure. While these funds have not yet uncovered an effective pharmacological treatment for VHL, the supported research has resulted in approval of multiple cancer drugs for other cancers including kidney and breast cancers.

 

 

I want to help.

It is only though the generosity of our supporters and our volunteers that we can offer so many different programs. We are asking you to join us and continue your support.

VHL FactsLearn more
VHL Incidence Worldwide
One in 36,000

people in the world have VHL

Total VHL Incidence
200,000

people in the world have VHL

Onset Age of VHL Symptoms
23 years old

average age of first occurrence of VHL symptoms

VHL Diagnosis Age
32 years old

average age of diagnosis for VHL

Kidney Cancer Risk
40%

Risk of Kidney Cancer for families with VHL.