International Patient Organization for Primary Immunodeficiencies (IPOPI)

The decision to create the International Patient Organisation for Primary Immunodeficiencies (IPOPI), emanates from an interim organising committee meeting in Oxford, UK, in 1990. Two years later, in 1992, IPOPI was formally established in Lugano, Switzerland.

The small group of representatives from the primary immunodeficiency (PID) community who met in 1990 identified the need to start an organisation that provides international representation and support to national PID patient groups around the world.

Prominent among those responsible for the creation of IPOPI were Bob LeBien, (IPOPI Life President), Professor Helen Chapel, leading UK clinician (IPOPI Honorary Vice President), Martin Gatehouse, a parent from Switzerland, Robin Fanshawe and Fiona Sandford from Primary immunodeficiency Association (former UK patient group, PiA), and Maj-Lis Helstrom a parent from Sweden.

Ever since its creation IPOPI has made it its mission to improve awareness, access to early diagnosis and optimal treatments for PID patients worldwide.