July 4, 2018

From the Chairsperson’s desk

Dear Friends,  

In this issue of our newsletter, we bring you news of IPOPI’s actions which have taken place in the last few months in all regions of the World as IPOPI supported the organisation of 20 national NMO awareness and advocacy campaigns during World Primary Immunodeficiencies Week 2018, bringing our total number of WPIW supported campaigns well over 120 since the inception of the campaign in 2011. 

As the mid-year holiday season is upon us, we are fine-tuning the preparation of IPOPI’s XVth PID Patients Global Meeting which will be held in Lisbon, Portugal on 24-27 October and during which we will be welcoming our growing network of national member organisations. 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!

We have also started to work on the programme of IPIC2019 the 4th International Primary Immunodeficiencies Congress with our congress organising committee. IPIC2019 will be held in Madrid, Spain on 6-8 November, 2019. We are thankful to our colleagues in so many medical societies and other stakeholder organisations who have so enthusiastically indicated their support to what promises to be a very exciting edition of the congress. The programme will feature key clinical and diagnostic advances and developments in the field of clinical management of patients with a PID.

We are delighted to have supported so many National Member Organisations (NMOs) campaigns this year at the occasion of what was one of the most successful World Primary Immunodeficiencies Week (WPIW) campaigns to date. Many of our NMOs embraced the concept of the campaign by collaborating with the key stakeholders united around the theme “My future starts with early testing and diagnosis of Primary Immunodeficiency” highlighting the need to confront under-diagnosis and late diagnosis of PID.  I should also highlight the excellent performance of the global campaign on social media and the launch of the first WPIW awareness video in various languages.

Over the last couple of months, we were delighted to collaborate with our friends at ESID, ASID and APSID. Our Board member, Mr Andrea Gressani actively participated in the recent ESID Summer School in Italy organised by Dr Eleonora Gambineri, providing the patient perspective in the programme. Mrs Martine Pergent, IPOPI Vice-Chair, actively took part in a meeting of PID African experts for the update and the development of the Aprojects educational tools organised by the Moroccan PID society and ASID in Casablanca on 25-26 March 2018.  Mrs Christine Jeffery was delighted to participate in the 2nd Scientific Congress of the Asia Pacific Society for Immunodeficiencies (APSID) which took place in Chongqing China on May 7-8 2018, under the motto ”Primary Immunodeficiency Diseases and Beyond”.   I would also like to stress the fact that, thanks to the efforts of Mrs Roberta Anido de Pena, IPOPI was represented at the C20 Meeting in Argentina. Civil 20 (C20) is one of the seven Engagement Groups of the G20, characterized as a specific space through which civil society organisations from different parts of the world can contribute in a structured and sustained manner to the G20. Roberta specifically took part in the C20 2018 Global Health Working Group voicing the PID and Rare Diseases patients’ community for accelerating the response to achieve existing health commitments at the international level, by enforcing sustainable development goals and ensuring that no rare diseases’ patients are left behind.

Finally, IPOPI is advocating for the launch of an EU action on newborn screening for rare diseases in partnership with the International Society for Neonatal Screening. As part of the campaign which has received the support of key Members of the European Parliament (EP), Mr Johan Prévot, IPOPI’s Executive Director, gave a speech on SCID newborn screening illustrating the importance of prevention and newborn screening during the EP Interest Group on Innovation in Health and Social Care. In addition, IPOPI continues to work with its stakeholders at national level to push for the implementation of SCID Newborn Screening in Europe. Hopefully many countries will follow the example set by Norway who recently implemented NBS for SCID.  The snowball is starting to roll, now we all need to give it a push!

Enjoy reading about all the many activities in this edition of e-News.

Wishing you all good holidays be it summer or winter!

Jose Drabwell

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