Dear friends,
As the year comes to an end, it is with much pride that we look at the numerous achievements of IPOPI in 2017 but also with much humility that we look at all that still needs to be achieved for PID patients worldwide. Undoubtedly a major success for IPOPI this year has been the organisation of IPIC2017, the 3rd International Primary Immunodeficiency Congress, held in Dubai on November 8-10, 2017. I would like to take the opportunity of this editorial to thank all our speakers and chairs for their invaluable contributions, our supporting organisations and congress partners, our sponsors and exhibitors, and of course all our delegates. Over 600 participants attended this milestone event, IPOPI’s first congress outside Europe and the feedback received both during and after the event has really been excellent. One of the most frequent comment has been the high quality of the programme and the right balance of topics. This clearly re-affirmed our belief that IPIC is responding to a demand for an international patient-centred PID clinical care meeting. It was therefore with much pleasure that we announced in Dubai that IPIC2019, the 4th International Primary Immunodeficiency Congress will be held in Madrid, Spain on November 6-8, 2019. We have already started to actively work on the preparations for IPIC2019 so stay tuned to www.ipic2019.com for the latest information in the months to come.
IPIC2017 was also an important milestone for IPOPI because it marked our 25th anniversary as the global organisation working for the PID patient community as well as the launch of PID Genius, IPOPI’s companion app designed to assist PID patients in managing their health and medical agenda. The launch of such an app, a seemingly simple tool, requires a huge amount of preparation and work and I would like to say thank you to my colleagues from IPOPI’s staff and Board for their efforts and commitment and most particularly to Martine Pergent and Leire Solis. I would also like to extend IPOPI’s thanks to Kedrion who supported this project from its inception.
The last two months have also been marked by successful advocacy campaigns, with the recent announcement of the launch of a SCID newborn screening pilot programme in the UK and very positive developments on SCID newborn screening in Spain.
IPOPI organised its 10th PID Forum at the European Parliament in Brussels which looked at “Tackling the diagnostic odyssey in rare diseases through ERNs: the case of PIDs”. A set of EU recommendations was produced as an outcome of that meeting, more details of which can be found in this edition of e-News.
Just a few days ago, I came back from inspiring meetings in Thailand and Vietnam respectively. IPOPI jointly organised a PID scientific meeting in Bangkok with the Care for Rare Foundation, Erasmus University Hospital Rotterdam and Chulalongkorn University Hospital. The event brought together around 80 Thai doctors and another 10 doctors from Indonesia who attended by videoconference. A few days later IPOPI was in Vietnam where we organised a national PID clinical care meeting which brought together 170 doctors as well as a patients-doctors workshop attended by 100 participants. These meetings beyond their educational objectives were a great opportunity to assess progress made in the last couple of years. BMT treatment with matched donors as well as IG treatments is now reimbursed in Thailand and the country has set it as a goal to detect severe combined immunodeficiencies as early as possible and are actively looking at the need to implement SCID newborn screening. In Vietnam, the number of diagnosed patients has quadrupled in the last two years and immunoglobulin replacement therapy is now no longer only reimbursed for children but also for adults (80% reimbursement). Whilst in Malaysia, our Board member Bruce Lim organised a first-round table meeting with the Malaysian Ministry of Health to present a White Paper outlining steps necessary to improve diagnosis and access to care in the country. This shows us that step by step all the campaigning and programmes which IPOPI has worked on hand in hand with the doctors and the patients in the region are clearly starting to pay off. But IPOPI and its members were also very busy in many other regions as you will read in this e-News, and I am very pleased we could actively take part in the 10th Congress of the Moroccan Society for Primary Immunodeficiencies and the 1st Maghreb Immunoglobulin Expert meeting among others.
Now we turn towards the future with many projects already in the pipeline for IPOPI in 2018, not least our 15th Biennial Meeting which will be held in Lisbon on October 24-27 in collaboration with ESID and INGID’s meetings.
With this said I would like to wish you all a very happy, healthy and prosperous new year!
Happy holidays!
Jose Drabwell