I just got back from the Eighth International Medical Symposium on Von Hippel-Lindau in Denmark.
I have posted some early photos to share some of the excitement. The report will be going up in the next few days. The talks were phenomenal. We are learning so very much -- more than we ever imagined we COULD learn about VHL!
We had our first-ever representative from India. We learn so much each time we hear from a new country. Dr. Ashok is studying three families, none of whom have eye involvement. That's very unusual (usually at least 50-60% of the patients in a group have eye involvement.) They have not yet completed the DNA testing, and it could be that these families have a "large deletion" -- a kind of mutation we have previously seen associated with very little eye involvement.
Start saving up -- the Symposium in 2010 will be in Rio de Janeiro!
Watch http://vhl.org/conf2008 for the meeting report.
Best wishes,
Joyce