Early diagnosis and care
IPOPI Newborn Screening Activities
IPOPI is currently combining efforts at international and regional level with its National Member Organisations (NMOs) to organise national political and awareness campaigns.
NMOs around the world are leading great initiatives at national level in order to request the inclusion of SCID amongst the diseases which newborns are screened for at birth. IPOPI endeavours to assist and support their efforts in order to ensure that there is coordination between national, regional and international levels.
Globally, IPOPI actively supports national political advocacy campaigns aimed at accelerating the implementation of SCID newborn screening in a step-by-step approach at national level. IPOPI plays an important role in the outreach to Ministers of Health, heads of the national newborn screening committees or regional departments of health, in emphasising the need for SCID screening of babies at birth.
IPOPI supports its NMOs in organising meetings with national policy makers to advocate for SCID newborn screening, as well as providing expertise, advice and support to the NMO activities when needed.
IPOPI Participation in Newborn Screening at International events
As one of the founding members of Screen4Rare
- June 28, 2022
International Neonatal Screening Day
IPOPI Participation in Newborn Screening at Regional events
As one of the founding members of Screen4Rare
- October 11, 2021 – Online event
Achieving Equity and Innovation in Newborn Screening and in Familial Hypercholesterolemia Paediatric Screening across Europe (Slovenian Presidency event) - September 14, 2021 – Online event
Launch Meeting: ERN Expert Platform for Newborn Screening
IPOPI National Parliamentary events
- Spain – October 23, 2017, Spanish Congress, Madrid
For a life beyond the ‘bubble’ - UK – June 20, 2017, House of Lords, London
Campaigning for Severe Combined Immunodeficiency (SCID) to be part of the UK National New Born Screening - Italy – September 29, 2015, Library of the Senate, Rome
Newborn Screening for Severe Combined Immunodeficiency (SCID) - France – October 22, 2014, National Assembly, Paris
Bubble babies: towards newborn screening of a fatal condition