Everything begun in October 1998, when Prof Alain Fischer asked Martine & Francis Rembert, whose toddler was diagnosed with Wiskott Aldrich syndrome, if they would consider launching a patient organisation for PIDs.
Francis, as Founding president, was pleased to recall this moment that made him consider the issues he was facing in a broader perspective and start working for the general interest of primary immunodeficiency (PID) patients. It was also important to him to attend the IPOPI meeting in 1998 where he got to know enthusiastic patient representatives from mature patient groups from other countries. This meeting took place in Rhodes, and it was a decisive point.
The three presidents that succeeded to Francis (Francis Rembert, Guillaume Nicolas, Estelle Pointaux – current president) explained participants celebrating IRIS’ anniversary how difficult it seemed to them to succeed to the previous one, and finally how happy they were to have contributed to the growth of IRIS. From acting locally to covering the whole country, to involving regional delegates, to progressively caring more about adult patients, and to becoming known and acknowledged by all stakeholders, both public or private, IRIS thus became a full member of the community.
Different physicians that are part of IRIS’ scientific and medical panel provided overviews on what is changing in their perspective and how the association is working, including social and psychological aspects.