Paul Guijt International Gaucher Alliance

Paul Guijt, a volunteer with the International Gaucher Alliance (IGA), is 62 years now living with a rare enzyme deficiency. He had over 50 hospital admissions in the first two decades of his life, including extensive surgery and tons of medication. He studied theology and philosophy in Amsterdam, became a public officer at the Dutch Council on Health Insurance, and ended his career in 2010 as a policy advisor on quality management of national screening programs like neonatal and cancers. Among other positions, he was co-founder of the Dutch Gaucher Association, a board member of the Dutch umbrella organization on hereditary and congenital diseases, and prepared what became the IGA which is celebrating its 30th anniversary. He has some 30 years of experience with infusions at home, most of the time self-infusing. With the IGA, he currently leads the development of guidelines on self-management and home infusion therapy.