Board & Members

Board & Members

Board
During the founding meeting an executive committee was formed which was mandated to build the network in consultation with its membership.

The executive board is served by:

Grzegorz Wegrzyn,
Chairman
tel.: + 48 58 346 3014
Grzegorz Wegrzyn is professor of genetics at the University of Gdansk, Poland. He is the member of the Polish Mucopolisaccharidosis (MPS) patient association and has a daughter with MPS I.

Barbara Czeizel,
Vice Chair
tel. +36 136 30 270
Barbara Czeisel has a lifetime of involvement in genetic and congenital disease. She is the founder of the Early Developmental Centre in Budapest which provides free special care for children with unordinary development and assists families with counselling.

Selena Freisens,
Coordinator
tel. +49175 263 9986
Selena Freisens is a volunteer with an education in science and languages. Selena has spent a significant part of her life in Central and Eastern Europe and, in the past several years, has been working to help patients with rare (orphan) diseases in the CEE countries.

Members
CEE GN network currently counts alliances of national patient organisations and individuals in 8 countries: Poland, Hungary, Czech Republic, Slovenia, Bulgaria, Ukraine, Croatia, Serbia & Montenegro.
The alliance is limited to organisations, societies and individuals which have a primary involvement in genetic and congenital conditions active in Central and Eastern European countries.

CEE GN looks for new members within patient / parent organizations, individuals who wish to set up a patient organisation as well as scientists and scientific groups and institutions from Central and Eastern European Countries.

CEE GN aims at becoming an independent and democratic coalition of national disease umbrella groups, representing families involved in genetic and congenital conditions.

Representatives of patient organisations & individuals
Arkadiusz Bielak Neuromuscular Association Poland Al. Krakowska 272/1 02-210 Warsaw Poland Phone: 00-48-22 868 30 42 (h) Fax: 00-48-22 338 17 43 (o) Mobile: +48 607626824 Email: arkadiusz.bielak@hoop.com.pl	Ihor Bariliak Ukrainian Alliance for the Prevention of Birth Defects Skovoroda St. 2, Building 3, Room 209 National University of Kyiv Mohyla Academy Kyiv 04070 Ukraine Office: +38 044-230-2765 Email: baryliak@kyiv.utel.net.ua
Boris Sustarsic Muscular Dystrophy Association Slovenia President European Alliance Neuromuscular Disease Associations Linhartova 1 1000 Ljubljana Slovenia Mobile: 00-386-41707700 Phone: 00-386-1-4720500 Fax : 00-386- 1 43 28 142 Email: dds@s5.net info@drustvo-distrofikov.si	Grzegorz Wegrzyn MPS Patient Association Poland Laboratory of Molecular Genetics Department of Molecular Biology University of Gdansk ul. Kladki 24 80-822 Gdansk Poland Phone: + 48 58 346 3014 Phone: + 48 58 620 2346 mobile: + 48 501141252 fax: + 48 58 301 0072 Email: wegrzyn@biotech.univ.gda.pl
Ales Kranjc Kuslan Parents Association Muscular Dystrophy Association of Slovenia Phone: +38 6 41 70 90 49 Email: Kuslan@siol.net	Selena Freisens Genzyme CEE GmbH Bleicherstrasse 10 78467 Konstanz Germany Phone: +49 7531 457 27 21 Fax: + 49 7531 457 27 99 Mobile: + 49 175 263 99 86 Email: Selena.Freisens@genzyme.com
Barbara Czeizel Early Development Center Csantavér köz. 9-11 1146 Budapest Phone/fax: +361363 0270 Email: Czeizel.barbara@koraifejleszto.hu	Rumen Stefanov, Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) Bulgarian Association for Promotion of Education and Science (BAPES) 4 Bratia Sveshtarovi str., 4017 Plovdiv, Bulgaria Phone: +359-88-7948703 Email: stefanov@raredis.org URL: www.raredis.org
Scientists on behalf of patients groups
Dr. Mirando Mrsic University Hospital Zagreb Kispatic Sirno 12 10000 Zagreb Croatia Phone: +3851 49200 19 Fax : +38 5 1481 85 48 Email: Mirando.Mrsic@Inet.hr	Dr. Nada Suvajdzic - Vukovic Institute of Haematology, Clinical Center of Serbia 2 Koste Todorovic str. 11000 Beograd Serbia and Montenegro Phone/Fax: +38 11 13 6155 64 Phone/Fax: +38 11 12 44 57 20 Mobile: +38 16 42 77 62 27 Email: nvukovic@Eunet.yu
Prof. Dr. Ana Stavljenic - Rukavina Clinical Institute for Laboratory Diagnosis Croatia University of Zagreb and Clinical Hospital Centre Kispaticeva 12 Zagreb Croatia Phone: +38 5 12 38 80 11 Email: ana.stavljenic-rukavina@zg.tel.hr	Prof. Dr. Anna Tylki - Szymanska The Children´s Memorial Institute Poland Department of Metabolic Diseases Aleja Dzieci Polskich 20 04736 Warszawa-Miedzylesie Poland Phone: +48 22 8 15 74 90 Email: atylki@czd.waw.pl
Prof. Dr. Endre Czeizel Genetikai es Esaladtervezesi Tanacsadas Bolgarkerek u. 3. 1148 Budapest Hungary Phone: +36 1 273 1913 Fax:+36 1 273 1914 Email:czeizel@interware.hu	Prof. Dr. Emil Simeonov Clinic of Paediatric Diseases "Alexandrovska" University Hospital 1, St. Georgi Sofijski str., Sofia Bulgaria Phone/Fax: (+359 2) 9230 753 Mobile: (+359 88) 8308 773 Email: esimeonov@mail.orbitel.bg
Prof. Grzegorz Wegrzyn Laboratory of Molecular Genetics Department of Molecular Biology University of Gdansk ul. Kladki 24 80-822 Gdansk Poland Phone: + 48 58 346 3014 Phone: + 48 58 620 2346 mobile: + 48 501141252 Fax: + 48 58 301 0072 Email: wegrzyn@biotech.univ.gda.pl	Dr. Rumen Stefanov, MD, SM, PhD Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) Bulgarian Association for Promotion of Education and Science (BAPES) 4 Bratia Sveshtarovi str., 4017 Plovdiv, Bulgaria E -mail: stefanov@raredis.org ; URL: www.raredis.org Phone: +359-88-7948703


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