December 21, 2016

From the Chairsperson’s desk

Dear friends,

Well, here we are. It is hard to believe that three months have already passed since IPOPI organised its successful 14th Biennial Patients Meeting in Barcelona alongside our partner organisations ESID and INGID and that the year end is upon us.

Of course since then, IPOPI has been extremely busy in all regions of the world. With a new Board of Directors and a larger staff IPOPI is more than ever committed to laying down the foundations of an improved global framework of care for our patients community.

In Asia, two first-ever National PID Events bringing together doctors and patients took place in Taipei and Manila. These Launch Meetings featured clinical workshops catering for the local doctors as well as patients’ meetings to foster the launch of new patient groups in the region. By increasing awareness of PIDs and showcasing the successful advocacy work of PID patient groups working hand in hand with doctors around the world, IPOPI hopes to inspire many other countries to embark on a similar journey and ensure patients’ needs and rights are appropriately represented. It was therefore with great honour that IPOPI accepted the invitation by the Asia Pacific Economic Cooperation (APEC) to give a presentation on “Addressing PID Patients Needs in the Asia Pacific Region” during the 3rd APEC Blood Supply Chain Policy Forum.

In Europe, and shortly after addressing the need to tackle disparities of care for PID patients during its 7th PID Forum at the European Parliament in October, IPOPI will shortly organise its 8th PID Forum. The event will address the important topic of the impact of Brexit on Rare Diseases patients and will specifically focus on the experience of the PID community, with the aim of formulating recommendations on key priority areas with regards to cross border access to care. IPOPI is also working hard in Spain with our stakeholders to push for the implementation of SCID newborn screening in the country and significant steps forwards are being taken. Working with Health First Europe, IPOPI took part in important policy discussions around anti-microbial resistance during a Meeting of the European Parliamentary Interest Group on Innovation in Health and Social Care. Another key development is the recent approval by the European Reference Network (ERN) Board of Member States of the RITA ERN which represents Primary Immunodeficiencies, Auto-Inflammatory and Auto-Immune Disorders. This is a great success and example of successful cooperation with IPOPI and ESID working together with other key stakeholders’ organisations from the auto-inflammatory and auto-immune fields. I was personally delighted to attend the excellent meeting organised by UK Primary Immunodeficiency Network (UKPIN) in November.

Meanwhile in Africa and Latin America, IPOPI has also been actively working in collaboration with its national member organisations. My colleague Martine Pergent was a member of the 11th International Conference on Rare Diseases & Orphan Drugs (ICORD) which took place in Cape Town, South Africa, on October 19-22. The event was very successful with an attendance of over 200 delegates and strong focus on PIDs which contributed to further enhancing PID awareness in the region. Literally on the same day, IPOPI was also present in Bolivia where the first ever Scientific Meeting on PIDs was organised at the initiative of IPOPI’s NMO in Bolivia (FIDEP) whom I would like to congratulate warmly for the amazing work they have done since their very recent launch in the country. Roberta Anido de Pena, IPOPI’s Board member responsible for the LATAM region, actively participated in the successful meeting which brought together about 70 doctors from different medical disciplines in the country.

Numerous other important initiatives have taken place in the last three months many of which were driven by IPOPI’s NMOs which I invite you all to read in this issue of e-News.

Finally, I invite you to take a look at our IPIC2017 congress website where you can find the latest information on the 3rd International Primary Immunodeficiencies Congress (IPIC2017). This includes information from our partner airline Emirates on available discounts for our congress delegates when flying with Emirates as well as our early bird rates. The support to the congress by medical societies is phenomenal with well over 20 societies endorsing IPIC2017. We are thankful to all those groups as well as to an increased number of corporate partners who are supporting our 3rd International Primary Immunodeficiencies Congress.

IPOPI looks forward to another great year in 2017!

I wish you all happy holidays and a successful and healthy New Year!

Jose Drabwell