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Central and Eastern European Genetic Network CEE GN

2. CEE GN . CEE GN is a coalition of patient, family support groups and individuals, working together with science and industry to supporting people with common and rare genetic and congenital conditions in countries of Central and Eastern Europe. CEE GN was founded in October 2003 in Cavtat, Croa

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Central and Eastern European Genetic Network CEE GN

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    1. 1 Central and Eastern European Genetic Network (CEE GN) Grzegorz Wegrzyn Chairman Munich, 12th to 14th June 2004

    2. 2 CEE GN CEE GN is a coalition of patient, family support groups and individuals, working together with science and industry to supporting people with common and rare genetic and congenital conditions in countries of Central and Eastern Europe. CEE GN was founded in October 2003 in Cavtat, Croatia, at a meeting with presence of representatives from 8 Central and Eastern European countries. The alliance is currently under its registration in Hungary as a non-profitable organisation, with the headquarter in Hungary. CEE GN is the partner of the European Genetic Alliance (EGA)

    3. 3 CEE GN- Aims CEE GN has a focus on the common needs of patients and their families related to the backward position of CEE countries and strives to facilitate their fast integration in the EU as a top priority. CEE GN has aim to raise awareness of the needs of people with genetic conditions in Central and Eastern Europe, as well as of different patient organisations with the same or similar aim. CEE GN aims to raise awareness about health care situation, health care policy and inequalities concerning genetic diseases in Central and Eastern European countries on local as well as on European levels, and strive for improvements. CEE GN aims to promote research into causes and cures for these conditions, and to press for the development and availability of medical products and services that will benefit all who need them quickly and efficiently.

    4. 4 CEE GN- Aims (cont.) To actively promote an understanding of genetic and rare diseases and stimulate interaction between government, physicians, regulators, industry and patient groups. CEE GN will lobby for more investments in research for development of new drugs, for better services, facilitating legislation and equitable healthcare budgets in CEE countries. CEE GN welcomes collaboration with other networks of patient organisations, scientific and industrial groups as far as this serves the interest of patients in CEE countries and has a focus on research & development in the field of genetics, genomics and biotechnology.

    5. 5 CEE GN- Mission CEE GN is working for a voice in research and health policy and seeks a situation in which genetic diseases are understood, effectively treated, prevented and the people affected supported. CEE GN aims at becoming an independent and democratic coalition of national disease umbrella groups, representing families involved in genetic, including rare and congenital conditions in Central and Eastern Europe. CEE GN will voice and articulate a clear, patient focused perspective on genetic and medical biotechnological issues and their ethical, legal, psycho-social and cultural implications on the national level, as well in European political, scientific and industrial arena.

    6. 6 CEE GN- 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. CEE GN is limited to organisations, societies and individuals with a primary involvement in genetic, including rare and congenital conditions and are active in Central and Eastern European countries. Medical Advisory Board has been created with scientists and physicians from Central and Eastern European countries involved in genetic disorders to support the aims of the CEE GN. The CEE genetic network 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.

    7. 7 CEE GN- Governance For the first few years the CEE GN wishes to work closely together with science and industry and all others active in the field of genetics, genomics and biotechnology as far as patients' needs are focus, as the situation in many CEE countries is rather deplorable and patient organisations are generally speaking in their infancy and need much support. The network strives to set up, in line with the EGA, a network of national alliances of patient groups involved in genetic and congenital conditions. The membership will assemble in conjunction with the annual meetings of the EGA and the ESHG. The assembly has all the power and authority to govern the network. The network participates in the European Genetic Alliance on behalf of the national alliances from various Central and Eastern European countries.

    8. 8 CEE GN- Recent Publications Proceedings from the CEE working round table in Cavtat, Croatia, 11th October 2003: �Rare disorders � a challenge for Health Care Systems in Central and Eastern European Countries�.

    9. 9 CEE GN- WebSite Currently under construction: www.velouria.nl/demo/ceegn

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