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History

2001

It was in April 2001 that some representatives of patient organisations met in Lyon during the bi-annual international congress of the Global Life Sciences Forum.Here, these patient representatives decided to start a collaboration and to explore the options for an International Alliance with a focus on genetics and biotechnology being potential tools for prevention and treatment of chronic and serious diseases. Moreover the need for accredited, high quality networks of clinical genetic services was expressed as these centres could answer the many questions from people feeling at risk and seeking advise.

Participants of this meeting were:

Ysbrand Poortman (World Alliance Neuromuscular Diseace Associations(WANDA), European Platform Patient Organiastions, Science and Industry (EPPOSI), Dutch Alliance Parent and Patient Organisations(VSOP))

Patrick Terry (American Genetic Alliance)

Alastair Kent (European Alliance of Parent and Patient Organisations (EAGS), Genetic Interest Groups of Great Britain)

Dariun Farhud (Alliance of Parents and Patients Organisations of Iran)

Karen Turner (Belgian national Alliance for rare Diseases, disorders and dissabilities (RDB, Rare Disorder Belgium))

Sebastien Kessler (Roman and Italian Swiss Alliance for Neuromuscular Diseases (ASRIM))

Fons Dekkers (European Health Forum (EHF))

2002

A year later, the group, in the meantime extended, met in Vienna in conjunction with the quadrennial meeting of the International Federation of Human Genetic Societies. At this occasion, the group issued a statement giving education a high priority.

2003

April 2003, representatives of patient alliances from all continents gathered again in Lyon in conjunction with the Global Life Sciences Forum. On 10 April 2003 the establishment of the International Alliance of Parent and Patient organisations involved in inherited diseases and acquired birth disorders (IGA) became a fact. A press-release was issued containing the objectives, the plans and the founding organisations. 

Press release

April 9, 2003 Lyon

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

Aknowledgement

IGA wishes to pay tribute to the Biovision committee and to the King Baudouin Foundation for their support.

Website: Websteen