Early diagnosis and care
Objective 1: Improve access to early diagnosis & patient-centred care
EU PID Forum at the European Parliament
- EU PID Forum: When rare meets the not-so-rare: the case of PIDs and SIDs
On December 9, 2025, the International Patient Organisation for Primary Immunodeficiencies (IPOPI) organised a PID Forum titled “When rare meets the not-so-rare: The case of PIDs and SIDs,”. The event was chaired by MEP Michalis Hadjipantela (EPP, Cyprus) and MEP Tomislav Sokol (EPP, Croatia).
IPOPI PIDetect Programme
The IPOPI PIDetect is an IPOPI international programme aimed at improving low Primary Immunodeficiency (PID) diagnostic rates in developing countries by training healthcare professionals at PID centres under expert supervision.
- IPOPI PIDetect 2024/2025: Enhancing Diagnostic Abilities in Mali
In 2024, two doctors from Mali completed a 7-week training in Morocco under the guidance of Prof Aziz Bousfiha and his expert team at the Children’s Hospital, Ibn Rochd University Hospital in Casablanca, Morocco. This was followed in 2025 by three in-person activities in hospitals in Mali, aimed at sharing the knowledge acquired on Inborn Errors of Immunity with fellow colleagues.
- IPOPI PIDetect 2023: Enhancing Diagnostic Abilities in Moldova
In 2023, two Moldovan clinicians received training at the Romanian PID reference centre in Timisoara, led by Prof Mihaela Bataneant. Following this, a hybrid conference in Chisinau helped to disseminate the acquired knowledge on PID to a broader medical community.
- IPOPI PIDetect 2022: Enhancing Diagnostic Abilities in Bangladesh
From 2022 to 2024, three healthcare professionals from Bangladesh received clinical and laboratory training at PGIMER in India, led by Prof Surjit Singh. The programme concluded with a CME-accredited conference in Dhaka, ensuring the dissemination of newly acquired knowledge and skills to a broader medical community.
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.
IPIC – International Primary Immunodeficiencies Congress
IPIC 7th Edition was held in the beautiful city of Prague, Czech Republic, from 5-7 November, 2025.
With over 900 attendees, IPIC2025 was a truly inspiring gathering of our global community—filled with learning, collaboration, and shared commitment to advancing care for people with primary immunodeficiencies.
IPIC has become a premier international congress focused on PID clinical care and distinguished by its unique patient-centred programme. With a truly global influence, the congress has earned its definite place and role in the PID clinical landscape. The CME-accredited clinical programme of IPIC is structured to complement other existing international and regional PID scientific meetings.
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.
