Personal Report from the Rio Symposium

When I sat down on the plane headed home to Germany, I had four days full of exciting events behind me. We started on Thursday afternoon with a meeting about changes to the screening protocol for the new Handbook. With representatives from Denmark, the Netherlands, Germany, Spain, USA, Brazil, and Argentina, we were able to get a good picture of the international experience.

Chris Golz, Pr. Jochen Decker, Joyce, and Elena from Brazil

In the evening, we were invited by Dr. Rocha (Brazilian head of the Tumor Bank) to a traditional Brazilian barbecue. Many of the researchers knew each other from prior Symposia. For me, it was still uncharted territory. With a fruity drink with caipirinhas and delicious food, the atmosphere was perfect to meet and exchange ideas.

During the next two days, we turned to basic research and the medical aspects of VHL disease.

During the scientific contributions from Brazil, some families were present. They were very warm and friendly. Language barriers were overcome by hands and feet, smiles and hugs.

Sunday was dedicated to the patients and their families. Dr. Rocha described the genetics and biochemical basis of VHL disease. For many of the families, this was their first such meeting and probably the first time they had heard information at this depth. Later, several of the families had the opportunity to tell their stories and exchange ideas. It quickly became clear that the Brazilian families have had experiences very different from my own. In my family, my mother and I have been followed carefully and have received good preventive medical care for VHL, so we are both healthy and doing well. For most families in Brazil, while VHL has been in their families for generations, they have only recently received the right diagnosis. Most families had lost loved ones or seen serious disability from VHL. And even once the diagnosis was made, many patients did not know what they should do it because there was no doctor in their area who knew anything about the disease. I think it is even more important for the Brazilians to have an Alliance like ours so that they can share information and support one another. There is now a website for the VHL organization in Brazil so that everyone has the opportunity to learn. (http://www.abvhl.com/).

On Monday, I went with Joyce Graff, Jochen Decker, and Arnim Pause to visit the offices of Dr. Claudio Casali da Rocha at the Tumor Bank of the National Cancer Institute of Brazil. We were told how the tumor bank works and some of the many issues you have to consider. Brazil is a very large country, larger than all of Europe. In addition, he is part of a consortium among all the countries of Latin America (from Mexico south). The geographic distances and the wide variety in the capabilities of the medical centers in each region provide hurdles and complications that we do not have in Germany. Dr. Rocha uses RNA-later, an alternative preservation method for surgically removed tissue, to preserve the RNA for research while permitting tissue to be sent by regular courier. The preferred method, preservation in liquid nitrogen, is not available in most hospitals in Latin America and requires investment in equipment and training of operating room personnel, which is not realistic in most areas and requires specially licensed couriers to transport it, especially across country boundaries.

All in all, it was a very informative experience for me. I am very grateful that I had the opportunity to attend this conference and learn so many new things.

As printed in the VHL Family Forum 19:1, January/February 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.