From the President’s desk

It is now 2 years of struggling with COVID-19! Living with such a risk is a learning experience that PID patients have courageously faced.  With its ups and downs, with its drama and hope. There is no doubt that this is a great ordeal for the PID community, however this is also an incredible time of progress: with efficient vaccines, with the first treatment appearing for severe or long-lasting symptoms, with numerous actions that have proven altogether the willingness, the knowledge, and the creativity of all stakeholders.

To begin with, our members (our national patient organisations) have proven great determination in acting, so did IPOPI. Is this a side effect of the pandemic? We all are so enthusiastically busy!

As you read through this newsletter you will discover a selection of IPOPI activities dedicated to advocacy, awareness, education, research, addressing stakeholders in different continents, flagging the most prevalent PIDs as well as very rare ones, daring innovation, all focused on our “raison d’être”; improving life for people with PID, worldwide and our way of operating, teaming up with stakeholders. None of us can do more or better than all of us!

This is not only a pertinent statement, but also vital in times where so many of PID patients struggle to simply being diagnosed, to access available -and affordable- treatment. We are particularly sensitive to the situation of plasma, whose collection is currently insufficient to meet the needs of our patients. The public health authorities in many continents and especially in Europe, must hear the voice of patients and the fact that ethics is a moral posture which consists in allowing any patient who has a proven need to access an existing treatment. The need to increase plasma collection in Europe has been discussed for two decades, now is the time to make a change and take patient-centered decisions. If not done; the situation will continue to deteriorate. This is a message that IPOPI has been strongly pushing for in all relevant recent policy discussions and consultations.

We have it all: the willingness to improve situations, to lead and team up on projects, we have a plan and know what would dramatically improve our patients’ situation and we have the energy for it! It is under these auspices that we are preparing for the year to come! To everyone, on behalf of the IPOPI team, I would like to wish you a merry holiday season and a happy new year. Full of joy, success and lovely times with your beloved ones, and much success on the PID field. And again, please, take care!

Martine Pergent
IPOPI President