March 23, 2016

From the Chairsperson’s desk

Dear friends,

After the busy days of December last year, a short but welcome rest was enjoyed by us all, but not for long because IPOPI has a full agenda for 2016. One of the highlights of this year is our XIVth Biennial meeting in Barcelona on 21-24 September where we will be meeting with numerous delegates of our member organisations, alongside our partner organisations ESID and INGID. Barcelona is a very busy place in September and I would urge all our delegates to make their travel arrangements as soon as possible.

Rare Diseases Day was recently held all over the world and now we are concentrating on World PI Week (WPIW). IPOPI will support 20 national campaigns this year bringing the number of IPOPI supported national campaigns since 2010 close to 90.  For all NMOs and stakeholders planning events or campaigns during WPIW please make sure to check the WPIW website where you will find the official 2016 materials including the WPIW2016 poster translated in a variety of languages. We are looking forward to a real collaborative campaign across the world.
Every report counts, every photo or video tells its own story, every word spoken will help to raise awareness, use the slogan TEST – DIAGNOSE – TREAT. To coincide with the WPIW we are organising two IPOPI events: the first one will be our 1st Asian Regional Patients Meeting in Hong Kong to build on IPOPI’s Asian development programme started in 2012, and in addition we will be at the EU parliament in Brussels to make European politicians and policymakers aware of World PI Week as well as of this extremely complex group of diseases and the special therapies that should be in place to treat our patients.

Our interaction with other organisations whose patients need plasma derived therapies is continuing to increase. A successful PLUS stakeholders meeting took place in the beginning of this year where the complex issue of MSM Blood Donations and diverging national policies was discussed as well as the future revision of the EU Blood Directive.

IPOPI has been providing logistical support and actively involved in the creation of the European Reference Network (ERN) for Rare Immunological and Auto-inflammatory disorders, one of the 21 ERNs that have been established. The goal of these networks are to improve the quality/safety and access to highly specialised healthcare through a patient-centred collaborative approach. IPOPI looks forward to continue this work including with the future Board of the ERN.

As you may have seen, IPOPITV has also recently been launched and this new online tool will be your source for video materials around access to care, diagnosis and quality of life aspects from PID patients and stakeholders in different world regions. This issue of e-News also contains plenty of updates from our increasingly active network of NMOs. On that note I warmly welcome our newest NMO, Indonesia and congratulate them for setting up the NMO after IPOPI’s launch meeting last year in Jakarta.

I would like to warmly congratulate our colleague Sven Fandrup who has served for so many years in the past on IPOPI’s Board and was recently recognised for his work on rare diseases in Denmark where he received the Danish rare disease award along with Dr Susanne Blichfeldt.

Last but not least, and on behalf of IPOPI’s Board of Directors and entire staff, I would like to convey our most sincere thoughts to the people and all PID patients and families in Belgium, following the recent horrific terrorist attacks in Brussels. IPOPI is determined to keep carrying out its work in Brussels which has been at the centre of so many positive developments for the rare diseases and PID communities in Europe in recent years. We must stand together and not let these events slow down our progress!

Best wishes

Jose Drabwell