13th IPOPI EU PID Forum – Newborn screening for rare diseases: A PID perspective.
IPOPI’s 13th EU PID Forum dedicated to “Newborn screening for rare diseases. A PID perspective” took place on December 4, 2019 at the European Parliament (Brussels, Belgium).
We are glad to have had 4 Members of the European Parliament (MEPs) co-chairing, namely, Dr Manuel Pizarro (Social-Democrats, Portugal), Ms Tilly Metz (Greens, Luxembourg), Ms Irena Joveva (Renew Europe, Slovenia) and Ms Sirpa Pietikainen (European People’s Party, Finland). Dr Tudor Ciuhodaru MEP (Social-Democrats, Romania) actively participated in the meeting.
The meeting set up the scene for a strong political debate on newborn screening for severe combined immunodeficiencies as well as other severe forms of PIDs (such as complete Di George syndrome) and launched a Call to action, highly supported by the MEPs present and by the Forum participants.