Editor's Note: In Padua we officially welcomed our newest affiliate group, Alianza Española de Familias de von Hippel-Lindau, based in Spain. Dr. Karina Villar of Toledo and President Susi Martinez of Barcelona brought a poster to share at the Symposium. They are off to a very strong start. They have already joined FEDER, an organization of rare diseases in the Spanish-speaking countries, similar to the National Organization for Rare Diseases in the U.S., and Eurordis, a similar organization among the states of the European Union. Dr. Villar shares some of her observations from their first meeting in Madrid.

After the presentations, one of two shy men who had remained unidentified in the back of the room stood up and suggested that each person in the room say their name and where they were from. This surprised me, but I was even more surprised by the events that followed. One by one, each of the attendees stood up and told the rest what VHL manifestations they had, what health problems, which organs affected, etc, how VHL had been for them... without hesitation or reservations. It was sharing of information as I had never witnessed before. It was so deeply moving ... and particularly for me, because it was all about VHL. I really enjoyed this exchange.

We have made a list of everyone’s names and phone numbers - in fact, those shy men were the ones most interested in having these phone numbers as soon as possible - I would have never believed what took place at that meeting if I hadn’t been there myself! My sister also attended and she was so glad she did and she had a chance to meet other families with VHL. It was very special, almost magic.

When the presentations were over, nobody moved, everyone stayed there for a long time. I was telling Susi that this was the best proof that everyone enjoyed the experience - they just WOULDN’T LEAVE! For the next meeting, we’re planning to request the participation of specialists, so that we can address more complex questions.

As printed in the VHL Family Forum 10:2, June 2002. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.