June 29, 2016
IPOPI took part in the ECRD conference
Johan Prévot was invited to speak at the European Rare Disease Conference (ECRD) 2016 on the subject of “Turning rare diseases into an international public health priority”, on Saturday 28 May 2016. Johan explained IPOPI’s achievements with regards to the Essential Medicines List, newborn screening for severe combine immunodeficiencies in Europe, the development of the PID Principles of care, and the collaboration established at European and international level with other stakeholders on key policy aspects for PID patients.
PID Principles of Care poster
A poster on the PIDs Principles of Care was also presented at the ECRD. The poster provided an overview of the 6 Principles identified as key for the provision of adequate care to PID patients. The poster will also be present at IPOPI’s Biennial meeting taking place in Barcelona from 21 to 24 September 2016.
Along with ECRD, IPOPI also attended the General Assembly of Rare Disease International, on 25 May 2016. The meeting had over 80 participants and went over the steps taken by Rare Disease International to make rare diseases an international priority.