The New Zealand Health Minister, Jonathan Coleman, announced on 7 November 2016 the implementation of newborn screening for severe combined immunodeficiencies (SCID) by mid-2017.
On the 3rd of December 2013, IRIS (French NMO), IPOPI and CEREDIH (Reference centre for PIDs) organised a meeting at the French Parliament chaired by Patricia Schillinger and Dominique Orliac, Members of French Parliament (MP)which looked at the topic ‘Improve access to diagnosis and treatment for PID Patients’.
As part of its partnership with Member of the European Parliament (MEP) Glenis Willmott, IPOPI participated in a small but important meeting in Nottingham United Kingdom on Saturday 19th November, on the need for implementation of SCID newborn screening. The meeting followed on IPOPI's campaign to introduce SCID newborn Screening in the European Union.
On Wednesday 15 June 2011, Mrs. Willmott MEP (S&D, United Kingdom) hosted the first Primary Immunodeficiency Forum organised by the International Patient Organisation for Primary Immunodefiencies (IPOPI) at the European Parliament in Brussels, Belgium. The meeting focused on newborn screening for Severe Combined Immunodeficiency (SCID), a life-threatening rare disorder causing the body’s immune system not to function properly. A group of experts representing patients, academics, physicians, industry and policy makers discussed the issues facing SCIDpatients and their families and agreed upon a set of key-recommendations to help the European Institutions and Member States in understanding the best way forward.
This report presents the concrete recommendations for policy action and summarises the key points that were addressed by the Forum.
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