Early diagnosis and care

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

IPOPI PID Forum at the European Parliament

13th IPOPI EU PID Forum – Newborn screening for rare diseases: A PID perspective.

IPOPI’s 13th EU PID Forum dedicated to “Newborn screening for rare diseases. A PID perspective” took place on December 4, 2019 at the European Parliament (Brussels, Belgium).
We are glad to have had 4 Members of the European Parliament (MEPs) co-chairing, namely, Dr Manuel Pizarro (Social-Democrats, Portugal), Ms Tilly Metz (Greens, Luxembourg), Ms Irena Joveva (Renew Europe, Slovenia) and Ms Sirpa Pietikainen (European People’s Party, Finland). Dr Tudor Ciuhodaru MEP (Social-Democrats, Romania) actively participated in the meeting.

The meeting set up the scene for a strong political debate on newborn screening for severe combined immunodeficiencies as well as other severe forms of PIDs (such as complete Di George syndrome) and launched a Call to action, highly supported by the MEPs present and by the Forum participants.

Kindly sponsored by:

IPIC – International Primary Immunodeficiencies Congress

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

IPOPI, welcomed 750 participants interested in learning more about diagnosis and clinical care of primary immunodeficiencies (PIDs) at IPIC2019, the fourth International Primary Immunodeficiencies Congress, that took place in Madrid, Spain, at the Hotel Marriot Auditorium, on 6-8 November 2019.

Dr Enrique Terol, the European Commission representative for European Reference Networks (ERNs), was invited to give the Welcome Address. He provided an interesting overview of the idea behind the creation of ERNs – tackling complex and rare conditions requiring specialized healthcare, knowledge and resources. He also shared the challenges that lay ahead, especially the integration in national health care systems and the effective support at hospital level.
The congress programme featured world-renowned experts in the field of PID as well as other key stakeholders who shared their invaluable experience and unique perspectives on major clinical developments and advances in the field. 96% of the congress participants stated that IPIC2019 was useful to extremely useful to their professional activity.
The congress was designed to advance PID clinical care by putting the patients’ interest at the centre of all discussions.

More about the congress 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 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.