December 18, 2015

From the Chairsperson’s desk

Dear Friends,

As 2015 draws to an end, I could not be more happy and proud of the achievements of IPOPI this year. Our second International Primary Immunodeficiency Congress (IPIC2015) was held in Budapest and was a resounding success, with 700 participants from over 70 countries. The congress has established itself as the key international clinical conference on primary immunodeficiency and I would like to take this opportunity to thank all our participants, speakers, chairpersons, congress committee members, supporting organisations and sponsors for their invaluable support. We have already started working on IPIC2017 which will be organized in vibrant Dubai. For more information on the congress be sure to visit our congress website which will be updated in due course with all the relevant congress information

Besides the congress IPOPI has been active in many different regions and I was delighted to take part in the IPOPI Latin American patients meeting organized back to back with the LASID conference in Buenos Aires, Argentina. The meeting was a great opportunity for patients in this region to come together and not only share experiences, but also to learn about important treatment developments. Importantly the meeting looked at the status of PID diagnosis and care in Latin America and outlined strategies to implement the PID principles of care in the region. Just a week later IPOPI organized the first ever National PID Meeting in Hanoi, Vietnam with an attendance of over 80 participants including doctors, patients and family members from all regions of the country. The event received great media attention, raising awareness and outlining the need to launch an IPOPI national member organisation to improve conditions for Vietnamese PID patients.

Just two days later, IPOPI held its 6th PID Forum at the European Parliament in Brussels with the great support of key Members of the European Parliament (MEPs) involved in health. The event was chaired by MEP Carlos Zorrinho (S&D, Portugal) and MEP José Inácio Faria (ALDE, Portugal) and was fully dedicated to the launch of the Principles of Care for Primary Immunodeficiencies (PID) and the need to implement them across the European Union. Several important conclusions were drawn from the discussions that took place during this event, notably the need for strong patient groups in all countries, and the ever-present necessity for policy-makers to reconsider newborn screening issues for PIDs. The meeting was concluded by highlighting the major value of the publication on PID Principles of Care. This document presents a PID framework for the care and management of PID patients and all participants were encouraged to make reference to this document in all meetings on PIDs in the future. IPOPI has also been participating in policy discussions around the European Reference Networks (ERNs) and is actively contributing to the ERN on Rare Immunological and auto-inflammatory disorders. Last but not least IPOPI also organized a successful National Parliamentary Event on SCID newborn screening at the Italian Senate in Rome. This event brought together patients, doctors, experts, politicians and policy makers and called for the implementation of SCID newborn screening at the national level. Follow up meetings are being envisaged and IPOPI looks forward to continue its advocacy work to ensure SCID newborn screening becomes a reality in all European Union Member States.

In this edition of eNews we also 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 wish to offer my deepest sympathy to all those around the world who have lost close family and friends. We have all seen the coverage of the terrible events that have happened this year. Hopefully in 2016 there will be less strife, less aggression and more collaborative actions towards peace.

Wishing you all peaceful and happy celebrations with your loved ones during these holidays.

Jose Drabwell