Early diagnosis and care

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

IPOPI PID Forum at the European Parliament

11th IPOPI EU PID Forum

On June 27th, 2018, the International Patient Organisation for Primary Immunodeficiencies (IPOPI) organised its 11th PID Forum called “Access to paediatric medicines: the case of PIDs/Towards the revision of Paediatric Regulation” at the European Parliament in Brussels (Belgium). The event was co-chaired by the Member of the European Parliament (MEP) Mr José Inácio Faria (EPP, Portugal) and by MEP Dr Elena Gentile (S&D, Italy), and supported by MEP Mr Tomáš
Zdechovský (EPP, Czech Republic).

Kindly sponsored by:

IPIC – International Primary Immunodeficiencies Congress

IPIC2019 will be held in Europe in the cosmopolitan city of Madrid on 6-8 November 2019!

The congress programme,  built  with input from doctors, patients and key PID community stakeholders, will focus on diagnosis and clinical care of primary immunodeficiencies (PID).

IPOPI is keen on advancing  PID clinical care through medical education and global collaboration. The national PID patient group AEDIP  and IPOPI have ongoing efforts towards nationwide implementation of SCID newborn screening making Spain a very interesting place organise IPOPI’s congress.

The congress programme will soon be available!

Learn more and subscribe to the congress newsletter here.

PID GENIUS, the personal assistant to PID patients

IPOPI launched PID GENIUS, the first mobile application developed by a patient organisation for people with primary immunodeficiencies (PIDs) for worldwide use, in November 2017.

PID GENIUS is the personal assistant to PID patients in search of an easy and dynamic way of keeping track of their treatments, day-to-day symptoms, vaccinations, contacts, most important documents. PID GENIUS also offers the possibility of displaying stored information in dashboards, facilitating discussions between patients and their medical specialists.

This project was possible thanks to the support of Kedrion Biopharma and is available for download at the Apple App Store and on Google Play.

More information and tutorial video

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 and with the strong commitment and support from MEP Ms. Glenis Willmott. 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.