October 19, 2018

From the Chairsperson’s desk

From the chairperson’s desk

Dear Friends,

The XVth PID Patients Global Meeting is upon us. This ever-growing global event will bring together around 100 PID patient group leaders from around the world and will be organised in parallel with the conferences organised by ESID and INGID. This year the event will also be an opportunity to celebrate IPOPI’s anniversary with our membership and over a quarter of a century of global PID patient advocacy. Whilst the programme is made up of educational lectures and interactive workshops aimed at our national member organisations, many sessions of the meeting are open to all stakeholders so do not hesitate to join us! Last but not least, the event will also feature the IPOPI LeBien and Luciano Vassalli Awards, respectively, granted every two years to an adult and a young adult who have made a significant difference in the world of PID.

Since the end of the mid-year holidays, IPOPI has been extremely busy and two important events were organised in September. For the first time, IPOPI held a skills-building advocacy and media training workshop in Asia. The two-day event was organised in Kuala Lumpur in parallel with the Malaysian National Clinical Immunology Symposium (NACLIS). The workshop was a great opportunity to ensure that the leadership of our growing network of national member organisations in the region could refine their advocacy and media communication skills through a programme made up of both theoretical presentations and role play interactive sessions. The enthusiasm of our participants was really nice to see, and I cannot wait to see them put the theory into practise!  Just a few days later IPOPI was in Manila, Philippines where a national workshop was organised with a view to help our NMO implement key strategic priorities for the PID community in the country and establish a campaign action plan. We were privileged to have Dr Eric Tayag, Director of Health Facilities and Infrastructure Development Team at the National Ministry of Health Assistant Secretary, among our participants to share the main concerns facing our PID community and identify courses of action. I am delighted to see the enormous progress that has been made in the whole region of South East Asia since the start of the IPOPI Bob LeBien Asian development programme five years ago and the fact that China just joined IPOPI’s membership is a great new step as well!

Of course, IPOPI is working in many other regions with its network of NMOs and it is my pleasure to announce that besides China, several new NMOs have recently been launched in all parts of the world from Kazakhstan to Kenya and Ecuador where recent developments have led to the launch of a new patient organisation as well.

At the international level, IPOPI has teamed up once again with the International Union of Immunological Society (IUIS) to respond to the World Health Organisation (WHO)’s Call for applications for the inclusion of diagnostic test categories in the next edition of the WHO Essential Diagnostic Tests (EDL). Increasing the diagnosis rates of primary immunodeficiencies remains a key strategic objective for IPOPI and I would like to thank all our stakeholders who are supporting us in this process. I was also pleased to attend a European stakeholder meeting organised by the Plasma Protein Therapeutics Association (PPTA) in Brussels on September 17, 2018.  The meeting was organised as a follow up to the stakeholders’ forum organised in Budapest earlier in the year in conjunction with the PPTA annual conference, IPPC. It was a good opportunity to discuss current priorities and challenges facing the rare plasma related disorders’ community and provide the perspective of PLUS (the Platform of Plasma Protein Users) of which IPOPI is a founding member.

The preparations for the 4th International Primary Immunodeficiencies Congress (IPIC2019) are also ongoing with our congress organising committee and scientific committee being fully involved. The congress preliminary programme has been established and promises to deliver great and interactive sessions on key clinical care and diagnosis hot topics for the PID community! The congress website will be launched later this month, so be sure to stay tuned for more news: www.ipic2019.com IPIC2019 will be held in Madrid, Spain on 6-8 November 2019!

I am also delighted to announce that an IPOPI webinar on Common Variable Immunodeficiency (CVID) treatment advances will be held on November 14 primarily targeting our NMOs and patients as well as interested stakeholders. Professor Klaus Warnatz (IPOPI Medical Advisory Member) will be our expert speaker. Register here!

IPOPI has received sad news regarding one of the very first patients to give their perspective of living with a PID at an IPIC congress. It is with great sadness that we let you know that Dawn Smith, a CVID patient from the UK who was a speaker at IPIC2015 has recently passed away. She was always fighting her disease at many different levels. The video of her participation at the congress can be watched here

Enjoy reading about all the many other activities from IPOPI and our NMOs in this edition of e-News.

Looking forward to seeing many of you in Lisbon in just a few weeks’ time, travel safely from all corners of the world!

Jose Drabwell

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