Patient and Parent organisations from all over the world unite!
Parent and Patient organisations from all over the world are meeting this week in Lyon, France, for the third World Life Sciences Forum - Biovision. These organisations formally established the 'International Genetic Alliance' (IGA), which was only a dream two years ago at the second World Life Science Forum - Biovision.
'The goal of the IGA is to give a voice to the millions of individuals and families all over the world suffering from genetic conditions'. Bringing this voice to the table, particularly in this Forum, provides a place for these families to influence biotechnology issues and their ethical, legal, psychosocial and cultural implications. Without the input of this particular group of stakeholders, society will not be able to translate research outcomes into education, information, prevention and therapy. Research in the field of genetics and biotechnology will be promoted and supported with these stakeholders at the table. In order to keep up with the fast rate of developments, partnership with science and industry is essential for the International Genetic Alliance.
The new European Genetic Alliance will be a major player in the IGA. The 'King Baudouin Foundation' (Belgium) has committed itself to the founding of a European Genetic Alliance by VSOP (Dutch Genetic Alliance) and GIG (Genetic Interest Group, UK). The European Genetic Alliance will be a democratic, independent alliance of parent and patient organisations. A one year grant enables the European Genetic Alliance to voice the European perspective of parent and patient organisations on genetic and biotechnical topics. The European Genetic Alliance is a core member of the International Genetic Alliance. This commitment of the King Baudouin Foundation facilitates a novel and exciting alliance amongst all of the genetic advocacy groups in Europe.
The King Baudouin Foundation is an independent pluralistic public-welfare foundation. The mission of the foundation is to improve people's living conditions.
The World Life Sciences Forum - Biovision represents a major opportunity for the IGA to meet other stakeholders, such as science and industry. Biovision aims to bring stakeholders together and facilitate dialogue between them.
Note for the press:
For more information please contact:
Ms. Susan van Benten 0031-6-1439-4618
s.v.benten@vsop.nl
For more information on the King Baudouin Foundation please contact:
Mrs. Nicoletti 0032-2-549-0216
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