SCID News

Nov 10, 2016

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.

Nov 1, 2016
IPOPI is pleased to publish an interactive roadmap on newborn screening for severe combined immunodeficiencies (SCID).
May 7, 2015
GSK (GlaxoSmithKline), Fondazione Telethon (Telethon) and Ospedale San Raffaele (OSR) recently announced the submission of a marketing application to the European Medicines Agency (EMA) for a gene therapy (GSK2696273) to treat patients with adenosine deaminase severe combined immunodeficiency syndrome (ADA-SCID)
Mar 17, 2014

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’.

Dec 8, 2011

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.

Sep 9, 2011

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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Contact
Executive Director: Johan Prevot
Email: johan@ipopi.org
Tel/Fax: +351 21 407 5720
UK office
Rocky Bottom, Trerieve
Downderry, PL11 3LY
United Kingdom

Tel: +44 1503 250 668
Fax: +44 1503 250 961
E-mail: info@ipopi.org
IPOPI is a charity registered in the UK.
Registration No. 1058005