Early diagnosis and care

Objective 1: Improve access to early diagnosis & patient-centred care

IPOPI PID Forum at the European Parliament

21st IPOPI EU PID Forum – Medicine shortages in the EU: the case of immunoglobulin and PIDs 

On September 8, 2022, IPOPI held its 21st PID Forum on “Medicine shortages in the EU: the case of immunoglobulin and PIDs”.

This virtual event will be hosted by Member of the European Parliament (MEP) István Ujhelyi (S&D, Hungary) and MEP Kateřina Konečná (GUE/NGL, Czech Republic). The event was moderated by Mr Johan Prevot, IPOPI Executive Director.

To find out more about the Forum, please find below the following documents:

Co-sponsored by:

IPOPI WHIM registry workshop 

  • On October 25, IPOPI had the pleasure of bringing together key opinion leaders in the field of WHIM syndrome to an online workshop, focused on understanding the current state of data collection on WHIM throughout the world and identifying the unmet needs remaining.
Sponsored by:

IPIC – International Primary Immunodeficiencies Congress

IPIC 5th Edition was held in beautiful Vilamoura, Portugal, over 27 to 29 April 2022.

IPIC5th Edition saw the joining together of 600 delegates interested in learning more about diagnosis and clinical care of primary immunodeficiencies (PIDs). Over 130 posters for presentation were approved with most presented by young scientists and physicians with an interest in PID.

The program celebrated the inspiring work that has been carried out by the global PID community however the event also highlighted the many challenges which still need to be addressed. The strength and continued success of IPIC is due to the well-balanced scientific program that is clinically orientated with input from key PID stakeholders namely doctors, scientists, patients and nurses – designed to complement other existing international congresses and scientific meetings.

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 is available in 8 languages and 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.