IPOPI in collaboration with its Italian National Member Organisation Associazone Immunodeficienze Primitive (AIP) and Italian experts in the field held a meeting on SCID newborn screening (NBS) at the Italian Senate in Rome on 29 September 2015. The meeting was chaired by Senator Paola Taverna with the support of Senator Laura Bianconi and aimed at promoting the need for implementation of SCID NBS in Italy.
Several experts and representatives from the Health authorities spoke at the event including among others Professor Chiara Azzari (Florence) who is heading a SCID newborn screening pilot programme in Tuscany, Prof Maria Cristina Pietrogrande (Milan), Prof Raffaele Bodolato (Brescia), Dr Serena Battilomo from the Ministry of Health. Mr Gaetano Priolo (AIP) and Mrs Bianca Pizzera (IPOPI Honorary Vice President) also both provided the patients viewpoint from a national and international perspective.
The meeting was supported by the Italian Undersecretary for Health through a statement read during the event. The Italian National Pediatrics Society and the Italian Rare Diseases Organisation (UNIAMO) were also in attendance. The event marked an important milestone in IPOPI’s SCID NBS advocacy campaign in Europe and helped identify the way forward in Italy. A meeting report with more information will be available soon on the IPOPI website.