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Ysbrand Poortman is a biologist by training.
He founded and directed various alliances of patient organizations such as the Dutch Alliance of Parent & Patient Organizations (VSOP, Soestdijk, the Netherlands), the Dutch National Platform for Patients & Consumers (NPCF, Utrecht, the Netherlands), European Alliance of Neuromuscular Disorder Associations (EAMDA, Malta ), European Neuro-Muscular Center for the coordination and stimulation of international research (ENMC, Baarn, the Netherlands).
In 1994, he became one of the founding members of the European Platform for Patients Organizations, Science and Industry (EPPOSI, Brussels ) of which he has been Chairman since 2000.
He is Vice-President of the World Alliance of Organizations for the Prevention and Treatment of Genetic Disease (WAOPBD, New York, USA) and since 1999 he is Vice-President of the International Genetic Alliance of Parent & Patient Organizations (IGA, Washington, USA) which was founded in 1999.
He is a member of various committees and boards, such as the Dutch National Health Council and the Medical Genetic Center of the Erasmus University in Rotterdam.
He authored many publications, such as a handbook on neuromuscular diseases; wrote chapters in books, articles, teaching packages and information materials on genetics.
Ysbrand Poortman, Vice-President, World Alliance Organizations for the Prevention and Treatment of Genetic and Congenital Conditions
A global partnership of scientists, doctors and patients' organizations working on prevention and management of genetic disease and birth defects.
Health is a prerequisite for well being and for economic growth.
Most of the common and the rare disorders have a genetic component which gives options for prevention and keys for (future) treatment.
In comparison with intercurrent diseases the burden of genetic disorders and birth defects have an extra dimension due to its specific characteristics such as lifelong, repetition in families, great demand for care, limited options for treatment, serious psycho social, physical and (often enormous) economical implications. Every year 7 million children are born with a genetic disease or birth defect in developing countries.
Thanks to scientific (genetic and bio molecular) progress and sophisticated (bio) technology the options for prevention and treatment have considerably increased. Some disease like sickle cell anemia does not occur any more in countries ( Cyprus ) which have appropriate preventive programs and genetic services.
The World Alliance of Organizations for prevention and treatment of genetic and congenital conditions (WAO) has a focus on perinatal healthcare in developing countries where 90% of the children of the world are born.
The March of Dimes in the United States , founder of the WAO, through its Global Programs is actively working in this field with focused programs and in partnership with WAO and others.
Parent and patient organizations are maturing and playing an increasing role in adequate (self) care systems and in the prevention and management of disease. Moreover they engage in partnerships with academia and industry and influence policymaking in the political arena. An example is the European Platform Patient Organizations, Science & Industry.
The WAO has a track record of conferences throughout the world aiming at public and scientific awareness, political readiness and at capacity building in terms of facilities/services and education and at establishing sustainable regional partnerships focusing on regional needs.
The Life Sciences provide a horizon for a considerable reduction in the incidence of genetic and congenital disorders, and also for a considerable improvement of the management of these conditions.