Biography:

Ysbrand Poortman is a Biologist by education and has a daughter with spinal muscular atrophy. After teaching in high school and academia, he focused on issues related to medical research and genetics and on strengthening parent/patient organizations.

In 1967 he founded the Dutch Association for Neuromuscular Diseases and in 1975 he founded the Dutch Genetic Alliance of Parent / Patient Organizations.

From 1992-2000 he has been vice president of the European Alliance of patient and parent organizations for Genetic Services and innovation in medicine, recently evolved in the European Genetic Alliances Network (EGAN, Brussels) of which he is senior advisor. He is the founder- & board member of the Centre for Clinical Genetics of the Erasmus University from 1980 to 2000 and has a senior advisory function at the Flemish Institute of Biotechnology. He is a member of the college of chairs of the World Life Sciences Forum, BioVision and of various other advisory (Dutch National Health Council), university curatorial and expert committees on the national, European and global level. He is also Secretary General of the International Genetic Alliance of Patient Organisations (IGA, Washington).

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