There is probably no other area in public health in which 28 national approaches could be considered as inefficient and ineffective as with rare diseases.
The specificities of rare diseases single them out as a unique domain of very high added value of action at Community level. (Council Recommendation of 8 June 2009 on an action in the field of rare diseases)
Taking action now on newborn screening for SCID and other rare diseases ensures coherence with the European policy in the field of rare diseases. This is a clear sign to European patients with rare diseases that Europe is not the addition of its Member States, but a greater entity that protects citizens’ lives and ensures they all have equal rights to adequate diagnosis and subsequent care, no matter how rare their disease is.
IPOPI held its first European PID Forum in June 2011 on the subject of SCID Newborn Screening. This Forum, chaired by Ms. Glenis Willmott MEP, allowed IPOPI to place for the first time ever the topic of SCID newborn screening on the European Parliament’s agenda. Since then, much has been done and many exciting developments have occurred!
Thanks to the strong commitment and support from Ms. Willmott, IPOPI was able to launch and promote amongst Members of the European Parliament a Call to Action on SCID newborn screening. The following year and thanks to additional supporters in the European Parliament, the three biggest political groups in the European Parliament supported and tabled an Oral Question to the European Commission calling for the EU Recommendations on Newborn Screening for SCID and other rare diseases. Since then IPOPI has engaged in discussions with relevant interest groups and EU policy makers to advocate for an EU coordinated action on newborn screening.
Main political and scientific documents prepared in the context of this advocacy campaign:
- European Parliament Oral Question to the European Commission on Newborn Screening, April 2013.
- White Paper on SCID Newborn Screening, 2012
- Call to Action on Newborn Screening for SCID, 2012
- PLUS Meeting with former Commissioner for Health to discuss, amongst others, the need for EU action on SCID newborn screening, in October 2011
- BBC press coverage of Ms Willmott’s meeting with patients with SCID and their families
- Press release from Ms Willmott on her meeting with patients with SCID and their families
- European Parliamentary Question to the European Commission on SCID newborn screening
- Report from the 1st PID Forum on SCID Newborn Screening, June 2011.
- Set of recommendations agreed during the Forum
- Press release from the International Society for Neonatal Screening on IPOPI’s PID Forum on SCID Newborn Screening
- Press release by Ms Willmott MEP on IPOPI’s PID Forum on SCID Newborn Screening