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Ukrainian-American Birth Defects Program

UABDP Reports Made at the European Conference of Human Genetics 2004 (Munich, Germany)

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June 18, 2004

Tetyana Vihovska,
UABDP Surveillance Coordinator

During June 12-15, 2004, Ukrainian-American Birth Defects Program team consisting of Prof. W. Wertelecki (UABDP Director), Dr. Tetyana Vihovska (UABDP Surveillance Coordinator), and Serhiy Lapchenko (UABDP Information Coordinator) took part at the European Conference of Human Genetics. The conference took place in the International Conference Center (ICM) of Munich (Germany).

The aims of the conference participation included:
There were about 1000 delegates from all over the Europe and some other countries (USA, Iran, Israel, Canada, Australia, China, Japan etc.). Among our posters the most interest was attracted to the poster about IBIS. There were many questions as to what materials could be found there. Especially that concerns educational materials for patients, parents and public which are presented in IBIS. Our feeling was that birth defects information is widely requested throughout the world and so far it is not enough. Conclusion: we should continue our efforts to enlarge contents of IBIS especially for patients and parents and in different languages.

Participants were also interested in results of birth defects surveillance conducted in Ukraine by the UABDP. We had to answer questions about NTDs, pilot flour fortification project to be implemented in Ukraine, possibilities of FAS diagnosis in children by Ukrainian doctors. Some visitors asked about OMNI-Center Network as the main basis of all our activities. It should be mentioned that some conference participants not just viewed our posters but took photographs and even recorded them to videotape.

The conference participants viewing the UABDP posters
The conference participants viewing the UABDP posters
The conference participants viewing the UABDP posters

We want to emphasize great interest paid to the UABDP posters from the part of the former Soviet Union representatives. Among them there were Prof. Viktor Baranov (Ott's Institute of Obstetrics and Gynecology, Saint-Petersburg, Russian Federation), Dr. Nadyezhda Rumyantseva (Institute of Hereditary Diseases, Minsk, Belarus), Dr. Victoria Sacara (Kishinev Scientific Research Institute of Mother and Child Health Care, Moldavia) and others. Dr. V. Sacara was particularly interested in UABDP experience of conducting birth defects surveillance according to international standards and expressed her desire to introduce this system in Moldavia. Among representatives from other countries there were specialists from USA, Germany, Netherlands, Belgium, Great Britain, Iran, Slovakia, etc. Dr. Maria Vasilova (Head of Humenne Neonatal Center, Slovakia) was very impressed by the activities of the OMNI-Center Network in the fields of telemedicine and promoting knowledge of birth defects diagnosis, care and prevention among specialists, parents and other interested people.

There were interesting meetings with Prof. Claude Stoll (Director of the Strasbourg Prospective Study of Congenital Malformations, France). He took an interest in realization of the pilot flour folic acid fortification project in Ukraine because he participated in the initial steps of that project.

From left to right: Prof. C. Stoll, Mr. S. Lapchenko, Dr. T. Vihovska, Prof. W. Wertelecki
From left to right: Prof. C. Stoll, Mr. S. Lapchenko,
Dr. T. Vihovska, Prof. W. Wertelecki

As the conference program included experience exchange among the parental support groups we had an opportunity to know the experience of the European organizations. We got into contact with the representatives of the European Gaucher Alliance. Among other materials they presented the books "Genes and you - Teaching about genetics from a human perspective" by Gill Mullinar and "Step by Step - How to Form a Patient Support Organization" by Ria Guijt and Susan Lewis. These editions will stand in good stead in the development of the Ukrainian Alliance for the Prevention of Birth Defects and preparing teaching curriculums in Ukraine.

Among our meetings we want to single out our conversation with Prof. Irmgard Nippert (Member of Board of Directors of the World Alliance of Organizations for the Prevention of Birth Defects, Germany). She highly appreciated activities of the Ukrainian-American Birth Defects Program related to the development of the Ukrainian Alliance for the Prevention of Birth Defects.

In conclusion, we consider our participation at the European Conference of Human Genetics 2004 to be very useful and important for further our activities.

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26/July/2004 sl