June 28, 2021

From the President’s desk

From the President’s desk

Do you have any idea on why June 28th happens to be an important date and will become so for our community? I am very pleased to share with you the launch of the International Neonatal Screening Day, which will be held on June 28th as a joint initiative from IPOPI, the International Society for Neonatal Screening (ISNS) and the European Society for Immunodeficiencies (ESID). This international neonatal screening day is a fantastic opportunity to raise awareness on the paradigm shift offered by the advances in science and medicine and to create a momentum where all the stakeholders can consider the best way to implement, improve or extend newborn screening practices and policies for the benefit of families and the society. 

For many years, newborn screening has been an important topic for IPOPI along with many other top priorities on our agenda. One of them is the situation with immunoglobulins and plasma. The pandemic has highlighted the very well-known weaknesses of the sector putting patients at risk of tensions and shortages throughout the world. The IPOPI SAFE Task Force has produced several statements on the vital need of immunoglobulins for PID patients and the importance of prioritisation for patients with NO alternative treatment.
At the same time, the European Commission is currently organising the revision of the blood directive in which IPOPI and PLUS continue to take an active role wherever we can to ensure that all recommendations and decisions are made with the prospect of allowing patients to get their lifesaving treatment and in consideration of  the growing demand that result from the improvement in diagnosis, including low and middle incomes countries. We call for a patient centered approach in the respect of all donors’ health and gift. Our experience in this field has taught us that donors are deeply motivated by the fact that they will support patients and save lives.

Another aspect of our educational work, including at policy level, is to address important and at times difficult subjects.  An example of this was with PID and cancer. We first approached this difficult subject with a webinar and then a leaflet. Cancer being one of the main priorities of the EU institutions, we were also very pleased to organize recently a successful European PID Forum hosted by MEP Irena Joveva (RE, Slovenia) and MEP Deirdre Clune (EPP, Ireland) who highlighted the European Union’s unique position to coordinate research and maximise the potential of studies by pooling scientific expertise, knowledge, and data. The Forum was the opportunity to launch our call to action on “Tackling primary immunodeficiencies and cancer”.

We also touched upon another hot topic, by organising a very successful webinar on the transition between childhood to adulthood. A matter where so much remains to be done. During this webinar some great experiences were shared along with the sharing of good practices on how to manage transition care, how to tackle the fact that there is no adult physician taking care of PIDs in a country and that PIDs are still considered as pediatric diseases only.

Therefore, we need strong national member organisations, who are able to build advocacy plans and address their specific national challenges and needs. This was exactly the purpose of the Asian advocacy workshop we organized which brought together patient group representatives from 10 countries from the region. It was a very well received educational event combining individual reflection, interactive work, and fun with very challenging play roles. 

And when it comes to having fun… when we hear from our members there is no doubt that the World PI Week has been a time of fun, but most importantly hard work and great satisfaction in common accomplishments: congresses, sporting events, webinars, meetings on various subjects, advocacy campaigns, awareness-raising activities… We were delighted to have been able to support 26 of our members with their projects: creativity was the prevalent point, bypassing the constraints due to COVID-19 and making 2021 a very good vintage. Congratulations to everyone, patients, doctors, nurses, employees of pharmaceutical companies.  Together you have made it a possibility to make our community rare and special, in every sense of the word!

To conclude this overview, I would like to look to the future: for the first time in a year and a half, despite ongoing differences between regions and countries of the world, there is a “glimpse of hope” in ‘eradicating the pandemic, as soon as possible through mass vaccination. This gives rise to the hope of being able to meet again in the coming months. However, the situation is still uncertain, but now we know how to handle it: we have learnt a lot. Therefore, we are at the starting blocks in preparation for the next important meetings:  ASID and LASID. With an eye on IPIC 5th Edition next April in Portugal, where I am optimistic we will all meet in person.

In the meantime, take care, remain careful and happy reading!


Martine Pergent
IPOPI Chairperson