September 25, 2015

From the Chairperson’s desk

Dear Friends,

The summer has been a very busy time for the entire IPOPI team. And now with only a few weeks left before the 2nd International Primary Immunodeficiency Congress (IPIC2015) which will be held in Budapest, Hungary, on 5-6 November 2015, we are even busier. During this congress we will explore key clinical topics for the primary immunodeficiency community in an exciting programme featuring key medical and scientific leaders. On the Thursday evening the Congress welcome dinner will be held on the famous Europa boat for a cruise on the beautiful Danube. I look forward to seeing many of you at this exciting second congress organised by IPOPI and its medical advisors.  For the latest information on the congress be sure to visit our congress website at

The summer months were also the opportunity to continue building on progress made with the IPOPI SCID Newborn screening advocacy campaign in Europe and at the time of writing these lines we are putting the final touches to a policy event which will be held at the Italian Senate in Rome at the end of September. The meeting will be a key milestone in the discussions currently ongoing in Italy around SCID Newborn screening (NBS) and will aim to accelerate the widespread implementation of SCID NBS in that country. After attending the European Expert meeting on SCID NBS in June, IPOPI is also engaging with other interested stakeholders to continue the promotion for an EU action on Newborn screening. And of course last but not least IPOPI is honoured to be the official patient organisation partnering in the exciting new joint stakeholder consortium project, SCIDnet, which aims to facilitate access to gene therapy for SCID patients.

We are also currently working on the preparations of IPOPI’s 6th PID Forum at the European Parliament which will promote the need for the implementation of the Primary Immunodeficiencies Principles of Care, a project led by IPOPI with the collaboration of experts from all regions of the globe. The forum will be the opportunity to highlight the discrepancies that currently exist between different countries in terms of access to diagnosis and care for PID patients and outline the key necessary elements and policies needed to ensure PID patients can live healthy and productive lives.

Recognizing the value of stakeholder collaboration in line with IPOPI’s new strategic plan for 2016-2020, IPOPI has also embarked on a number of new collaborations including with the newly created major Rare Diseases organisation Rare Diseases International (RDI). Besides being one of the founding members of RDI, Johan Prevot has joined the RDI Pre-Formation Group, a temporary steering committee responsible for taking forward the initiative and formalizing the organisation with the election of a Board of Directors. IPOPI also continued its fruitful collaboration with the Care-for-Rare Foundation which started earlier in the year with the South East Asian Expert regional meeting on PID in Bangkok, to join an awareness raising campaign in Turkey during which IPOPI’s National Member Organisation in Turkey gave a presentation. The initiative is centred on a photo exhibition which will travel the country to raise PID awareness in different regions and was kick-started with a launch event in Istanbul. We also very much look forward to the upcoming PLUS stakeholder consensus meeting to be held in Estoril, Portugal on 14-15 January 2016.

With this said and as usual we would like to take the opportunity of this new edition of e-News to update you on the myriad of awareness raising and advocacy campaigns organised by IPOPI’s active membership and hope you will enjoy reading the numerous articles about the latest national initiatives led by our patient community.

Finally I am delighted to extend a warm welcome to Puerto Rico the latest Associate National Member Organisation to join the IPOPI family.

With my best wishes to all our readers and looking forward to seeing many of you at the IPIC meeting in Budapest.

Jose Drabwell