On June 24 in Santiago, Chile, a press conference was held to present the book, "La Enfermedad de von Hippel-Lindau," a publication sponsored by the Chilean Medical Association and the VHL Family Alliance, published and distributed by Recalcine Pharmaceuticals. The Chairman of the Chilean Medical Association presented the book, and then Dr. Ramirez spoke about his experiences in helping Pierre Jacomet arrive at a diagnosis. Pierre had been told he had MEN (multiple endocrine neoplasia, another hereditary condition that can lead to pheochromocytomas), but Dr. Ramirez questioned that diagnosis and kept pursuing the question, finally arriving at VHL. Getting sufficient information on VHL was one major part of the problem.

While there is now a number of excellent articles about VHL in English, German, and French, there has been very little in Spanish other than a few articles describing one doctor’s experiences with one patient, similar to the early articles seen in English in the 1960’s and 70’s. This new book provides a comprehensive view of the condition in Spanish language, for physicians in Spanish-speaking countries worldwide.

Pierre Jacomet of Chile headed the effort to create this book. He drew material from the VHL Handbook (translated into Spanish by Dr. Myriam Gorospe), from Dr. Hartmut Neumann’s treatise on the preventive-medicine approach to VHL, and from his own experiences with pheochromocytomas. "The most important issue we want to communicate," said Pierre, "to the press and to the doctors throughout the Spanish-speaking world, is that we are already in touch with almost 10,000 people diagnosed with VHL in 67 countries, and that there are many more who are still undiagnosed. We need to find all of them, help them through their fears and doubts, help them obtain a diagnosis, and alert the medical community about how to identify and treat this elusive multi-symptomatic disease."

We are very excited to have this very important work in Spanish language. Recalcine is distributing the book to physicians throughout Central and South America, and the VHL Family Alliance will be distributing it also in the United States and Spain, and on the internet. We are hopeful that this will make an enormous difference in the lives of people with VHL and their families throughout the Spanish-speaking countries.

We are extremely grateful to Alejandro Weinstein, CEO of Recalcine, for bringing to fruition this invaluable contribution toward improving diagnosis, treatment, and quality of life for people with von Hippel-Lindau disease.

Watch for coverage in the news, especially in the magazine Que Pasa, and in newspapers associated with El Mercurio, which is the oldest and most prestigious newspaper in South America.

Now available!

If you know of a Spanish-speaking physician who needs this book, the best thing to do is to request a printed copy. There are wonderful illustrations in a beautifully paper-bound book. If it is needed urgently, it can be copied down over the internet, but be warned: those beautiful illustrations make it a very LARGE file! It is 8.5 megabytes. Do not attempt to download it unless you have a high-bandwidth connection or a lot of patience. It will take about 60 minutes at 56 K dial-up.

Click -- To request a print copy -- To download the pdf file

As printed in the VHL Family Forum 9:2, June 2001. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.