The European Commission (EC) will be sharing the IPOPI “Primary immune deficiencies — principles of care” (PID Principles of Care) with the Commission’s expert group on rare diseases. Many of them are Member States representatives working in the area of rare diseases, healthcare specialists and rare disease patient representatives.
This support is the result of the two Parliamentary Questions tabled by Member of the European Parliament (MEP) José Inácio Faria and MEP Carlos Zorrinho in March 2016 to the European Commission, following the IPOPI 6th PID Forum that took place in November 2015 in Brussels.
The first question tabled aimed at introducing the PID Principles of Care document to the EC, looking for institutional endorsement and requesting future action in the field of rare diseases and PIDs. The second question tabled called for the EC to push for the development of European guidelines on newborn screening for rare diseases, including SCID. Full question and answers can be viewed here).
The European Commission has also replied to the Question on neonatal screening for severe combined immunodeficiency tabled by MEP Faria and MEP Zorrinho. In the reply, the Commission reinstates the fact that it comes to Member States to decide on their health policy but that the European Commission can facilitate the exchange of best practices between countries. With this in mind, IPOPI has been supporting its NMO national campaigns to push for the implementation of SCID newborn screening. For more information about national SCID newborn screening campaigns, please click here.