December 18, 2018

From the President’s desk

Dear Friends,

Many of you who have been reading our e-News in the past years probably noticed that the picture on the editorial of our newsletter has changed. Mrs Jose Drabwell who led the IPOPI Board for many years has recently stepped down from her position as President. Jose has played a pivotal role in IPOPI’s growth and success. She has contributed through her tireless work for IPOPI not only to improve conditions for primary immunodeficiencies (PIDs)  patients worldwide but also to convey a great image and example: a person living with a PID who has had the right diagnosis and is able to access optimal treatment can lead a very productive life. We are fortunate that Jose is not leaving IPOPI and will remain on our Board of Directors where she can continue to provide us with her advice and experience. I am honoured to succeed to Jose as Chairperson of the IPOPI Board and would like to thank her very much for her friendship and collaboration over the last decade.

At the time of writing these lines, I am in Casablanca for the 11th Moroccan PID Congress and 2nd North African Meeting of IG Experts, in a continent which has embraced the concept of stakeholder collaboration to advocate for better access to diagnosis and care. I take this opportunity to thank wholeheartedly the Dean of Ibn Roch Hospital Casablanca, Prof Bousfiha and his team, Samia Akariou, godmother of Hajar and all IPOPI friends in this region for the honour they have given to me and the utmost pleasure I have to work at their side.
Just a week after our Global Patients Meetings, we were thrilled to embrace this concept as well in Bangkok, Thailand as we organised our 2nd IPOPI Regional PID Patients and Doctors meeting. The meeting was a great opportunity to review the current key PID priorities in the region from both the patients and the physician perspective. Interactive workshops featured on the programme among educational lectures and gave us the opportunity to reflect on ideas and strategies for the next World PI Week. A great difficult cases session was also incorporated in one of  the clinical sessions of the meeting and was very well received by our regional doctors.

More recently IPOPI held its 12th PID Forum at the European Parliament in Brussels to present the priorities of the PID community at EU level in light of the upcoming EU elections. The event was very well attended with numerous Members of the European Parliament in attendance alongside our patient representatives and stakeholders. A set of recommendations was launched which will form the basis for IPOPI’s campaign once the new Parliament is elected and will support our NMOs in their national advocacy efforts. This was a productive week in Brussels as IPOPI also actively participated in the launch of European recommendations on newborn health by the European Foundation for the Care  of Newborn Infants (EFCNI) at the European Parliament event and IPOPI was among the 28 organisations behind the 1st EU Health Summit which was held one day later.

Of course we have already started to work on our numerous 2019 projects and I am pleased to say that the website of our congress IPIC2019 which will be held in Madrid on 6-8 November 2019 has been launched at Make sure to visit the website for the latest on the congress and the programme which is now near final already. Registrations to the congress will open in January!

Our newsletter is always a platform to showcase the activities of our growing family of NMOs so I encourage you all to read about their exciting news in this edition of e-News!

I wish you all happy holidays and a healthy and successful 2019!

Martine Pergent

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