Report from Bonn, Germany

On March 17 Prof. Hartmut P.H. Neumann (University Hospital Freiburg) invited families from the German-speaking countries to join him for a meeting in a charming little inn "Zum Wilden Schwein" ("Under the sign of the Wild Boar") in the village of Duisdorf near Bonn, Germany. This site was chosen for its proximity to Dr. Neumann’s parents’ home, and to the cathedral city of Cologne (Koln). In addition to Dr. Hartmut Neumann, Dr. Luitgard Neumann (his sister, a geneticist at Charité Hospital, Berlin) and Joyce Graff (VHL Family Alliance, USA) were in attendance. Approximately 25 patients came from Germany, Austria, and Switzerland, filling the room quite completely.

Initially Prof. Neumann stressed the importance of adequately informing everybody concerned with VHL. He referred to a brochure for patients written by him. It is not a direct translation of the VHL Handbook used worldwide, but a similar undertaking in German language which includes explanations appropriate to the German health care system. It is of essential help both for patients and also for the attending physicians.

Dr. Neumann spoke about his vision of a family group in Germany, the possible goals of such an organization, particularly in supporting research on VHL, its organization, publications, and so on. Over the past 15 years his group has developed a good system of surveillance and preventive care. Nonetheless, what is really needed for the next generation are ways to prevent tumors from occurring and to shrink them without surgery. To achieve this vision money is needed for research.

Most important, what is needed now is to enroll additional family members in a program of DNA analysis to determine whether they are in fact at risk, and if so, to engage them in a program of regular screening to identify problems early when they are most easily treated.

He envisions a central German institute with an office that could assist families in doing the necessary screening, making the necessary appointments, with a lab and an information service. His dream is to have a foundation which would address research, diagnosis, and treatment of VHL. He asked those present to begin thinking of sources of funding for such an institute. For example, it currently takes 8-12 weeks to do a simple direct DNA test of family members in a family where the DNA alteration has been found. Finding the mutation in the first person to be tested in a family can take considerably longer. Technology exists now in other countries to improve these times (U.S., Italy), but it requires investment to improve this service in Germany.

The most important initial concern of a family support organization is to help people know that they are not alone. Because VHL is a rare illness, it is difficult to find good information. People may have had no information, or wrong information, from their local doctors, and many have significant fears they may not want to share with doctors. Joyce Graff presented the model used in the U.S. and other countries. The family organization can assist with these fears and concerns, and help connect people with competent help, such as is available through Dr. Neumann’s program in Freiburg or at the Charité in Berlin. VHLFA in the U.S. has a central information service (1-800-767-4845 or info@vhl.org) and contact people in most U.S. states. VHL France also has a system of regional contact persons, to minimize telephone costs for callers. A well-organized German-speaking group, with good connections to the English-language group in the U.S., would serve the German-speaking families very well.

At the moment there are two small German groups, one in Berlin under Peter Zeitzmann and Florian Hoffman and one being organized in the Northwest of Germany under Gerhard Alsmeier. Erika Trutmann also expressed interest in starting a support group in Switzerland. Contact names were shared with the group so that they could begin working together to create a structure that works. Before the group can begin to raise money for its own expenses or to support research, it will need to obtain official registration as a charity in each country. The German group has recently applied for charity status.

Joyce Graff said that the VHL Family Alliance would welcome an affiliate group in Germany, such as already exist in Australia, Canada, France, Ireland, Italy, Japan, New Zealand, and the United Kingdom. Help is needed in bridging the language barrier. Members who are bilingual and on the internet can assist with translating occasional correspondence between the English-speaking group and other language groups worldwide.

Dr. Luitgard Neumann mentioned that there is a genetic disease registry at the Verein Mosaik-Medico in Berlin. It was suggested that a registry of people with VHL in Germany could be very informative for research. The French registry project has resulted in a number of very enlightening articles.

People interested in finding a self-help group can do so by contacting one of the university hospitals, or by contacting the VHL Family Alliance at http://www.vhl.org In Germany the numbers to call are Gerhard Alsmeier +49 (59) 3192 9552, Florian Hofmann +49 (30) 6119057 or Peter Zeitzmann +49 (30) 472-9593 or in Belgium Chris Hendrickx at +32 (3) 658-0158. E-mail addresses are listed on the VHL website under international contacts. Erika in Switzerland is best reached by e-mail; voice messages for her will be taken in German by Chris Hendrickx.

Topics for future meetings were discussed: The most essential problem for the patients is how to find competent local medical care. Competent medical care implies too that the possible future development of symptoms is taken into consideration. Only as long as the patients find a physician who also plans for the future, can they deal with their anxiety and the mistakes that result from this anxiety. In addition, patients feel threatened by stigmatization and prejudices resulting from the lack of information about genetic disease among the general population. As in every country, the expansion of genetic information provides powerful tools for medical advancement, but also powerful tools that can be misused for discrimination. We all need to get involved in the ethical and legal discussions in our own countries.

Participants thanked Prof. Neumann for the organisation of the gathering, and for his work during the past years. After the meeting the patients whose mother tongue was German had dinner together. Many stayed for the following day’s Hufeland Prize ceremony in Cologne, lunch with Joyce Graff, and visits to the delicate gothic cathedral of Cologne.

In Cologne on Thursday Prof. Neumann was awarded the 1998 Hufeland Prize for Preventive Medicine. (See also page 16.) Professor Neumann’s award-winning thesis, "Von Hippel-Lindau Krankheit, Prävention und Prophylaxe bei einem hereditären Tumorsyndrom: Ein Modellprojekt" (VHL: A model project of prevention and preventive intervention in a hereditary tumor syndrome, German only). It contains many photographs, and is a good supplement to Dr. Neumann’s German-language Information Handbook. It costs 50 DM ($35 USD) plus shipping and can be ordered from the VHL Family Alliance or from Dr. Neumann’s address, Dr. Hartmut P.H. Neumann Medizinisch Universitatsklinik; Hugstetter Strasse 55; Freiberg im Breisgau; D-7800 GERMANY Fax: +49 (761) 270-3778; E-mail: neumann@mm41.ukl.uni-freiburg.de

As printed in the VHL Family Forum 7:2, June 1999.  For permission to reprint, please contact VHL Family Alliance, info@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

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