Dutch VHL Annual Meeting

by Dr. Rachel Giles, Chair, Netherlands

At our Annual Meeting on March 19, 2011, over 80 people gathered in the central town of Breukelen (Brooklyn’s name source). Volun­teers provided free childcare for kids that varied in age from 8 weeks to 10 years. After the opening business meeting, our former chair, Evert Ruis, gave a short presentation on the history of our organization and showed photos of meetings dating back to 1997. Two actresses/comedians—both former nurses—then performed skits, which started off with a rap about VHL. They had done their research well enough to rhyme lyrics with “pheochromocytoma”! They also acted out a doctor-patient discussion where the audience called out instructions to improve communication. Also, there was a scene depicting the awkwardness of discussing a health problem with someone you don’t know well that had us doubled over in laughter.

Dr. Marina Marinkovic, an ophthalmologist from Leiden University Medical Center, gave an outstandingly clear lecture on current treatment options for VHL-related retinal angiomas. Oncology dietician Jeanne Vogel, 2010 winner of the prestigious Dutch Cancer Society Muntendam prize, discussed the role of diet in VHL progression and postoperative recovery as well as the role of vitamins and other supplements. After lunch, Dr. Rachel Giles presented the Rare Disease Online Community for VHL and tried to place the Netherlands in a global VHL context. Patients, partners, youth (aged 12–25), and other interested supporters were then organized into four discussion groups supervised by prepared volunteers while snacks and drinks were served. It was a wonderful day!

As printed in the VHL Family Forum 19:2, April/May 2011. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.