Early diagnosis and care

Objective 1: To promote early diagnosis & ensure optimal access to care

IPOPI PID Forums at the European Parliament

9th IPOPI EU PID Forum 

IPOPI’s 9th PID Forum dedicated to ‘Growing older with a PID: transition of care and ageing’ took place at the European Parliament on June 22, 2017. The event was hosted by Member of the European Parliament (MEP) Dr Elena Gentile (S&D Italy), supported by Mr Carlos Zorrinho (S&D Portugal) and counted with the participation of Ms Sirpa Pietikainen (EPP, Finland).

A resulting set of Recommendations on PID transition care and ageing was released after the meeting.

Kindly sponsored by:

IPIC – International Primary Immunodeficiencies Congress

IPIC2017 – Join in Dubai!

IPIC2017 which will take place in the vibrant city of Dubai on 8-10 November 2017!
The congress programme promises to be even more exciting this time featuring an array of world renowned experts and other leading stakeholders from the PID community.  Join us in learning from their expertise and perspectives on major clinical considerations: Early detection for optimal care, Transplant advances, PID clinical priorities by world region, Novel treatments, PID care and ethical issues …among many others important topics!

Congress website 

SCID Newborn Screening campaign

Severe Combined Immunodeficiency (SCID) is the most severe form of PID and a paediatric emergency. Children born with SCID lack a working immune system and will die in the first year of life if undiagnosed and untreated. Screening newborn babies for SCID is possible and cost-effective. Many countries are including screening of SCID in their national newborn screening programmes – details in the IPOPI PID Map

IPOPI strives to ensure that babies born with SCIDs can have access to the earliest diagnosis possible allowing for successful and curable treatment.

IPOPI started raising awareness of the importance of SCID newborn screening (NBS) in the late 2000s in partnership with the European Parliament. A call for EU Recommendations on newborn screening for rare diseases such as SCID was the starting point and many regional and national SCID campaigns have followed.