Blog/group email

VHL Canada is also celebrating May is VHL Awareness Month*: Who gets VHL?
 
“VHL or von Hippel-Lindau disease is an autosomal dominant genetic condition resulting from a deletion or mutation in the VHL gene”:

• There’s a 50% chance of inheriting VHL if one parent has VHL
• Another 20% of people with VHL are first-in-family or de novo cases
• 1 in 36,000 people have VHL
• 900+ with VHL in Canada (10,000 in U.S; and 200,000 in world)
• The mean age of onset is 26 and 97% of people with a VHL gene mutation have symptoms by the age of 65
• VHL disease affects males and females and all ethnic groups equally, and occurs in all parts of the world

 
*Sources: VHL Alliance, vhl.org, and National Organization for Rare Disorders, rarediseases.org