June 29, 2016

From the Chairsperson’s desk

Dear friends,

As a Dutch citizen living in the UK the outcomes of the Brexit vote was devastating. The fact the UK will be leaving the European Union has shocked many of us and many questions are already being raised about the impact this may have for rare diseases patients, not only in the UK but elsewhere in the EU. IPOPI will be following these developments very closely and continue to advocate for the best possible access to diagnosis and care for all PID patients wherever they may live.

The last three months have been challenging but highly gratifying for the IPOPI team. Faced with unprecedented logistical difficulties due to the tragic events in Brussels, IPOPI nevertheless managed to organise a very successful first World Primary Immunodeficiencies Week Policy (WPIW) event in Brussels with the support of three leading Members of the European Parliament contributing to increase awareness among policy makers around WPIW and its motto “Test.Diagnose.Treat”. WPIW did not stop there for IPOPI as we also organised our first Asian Regional Patients Meeting in Hong Kong to coincide with the global awareness raising campaign, launched our new Burden of Treatment Survey, started a video roadshow aimed at gathering patient testimonials in different countries, published a new series of patient information leaflets and supported numerous patient campaigns and projects in all regions of the world.

Serious work has also commenced on the preparations for our next International Primary Immunodeficiencies Congress (IPIC2017) which will be held next year in Dubai, on 8-10 November 2017, at the Crowne Plaza Festival City Hotel. The IPIC Organising Committee and Scientific Committee are working hard on the congress programme which promises to be very exciting and as clinically orientated as the two previous events. The congress website will be launched after the summer at www.ipic2017.com so make sure to stay tuned for more information about the congress!

IPOPI has also actively participated in numerous important meetings including the 2nd 2016 PLUS consensus conference on the revision of the Blood Directive, the IPFA-PEI conference in Lisbon, the ECRD conference and Rare Diseases International meeting in Edinburgh, the Health First Europe meeting and the European Parliament’s Interest Group meeting on Innovation and Health and Social Care among others. IPOPI is also actively participating in the RITA European Reference Network representing the PID patients community in the discussion and decision making body.

IPOPI was delighted to welcome new associate national member organisations in its growing NMO network including Bolivia, Vietnam as well as a new NMO in Brazil, further extending the IPOPI family. I look forward to welcoming them all as well as all our other national member organisations in the upcoming 14th IPOPI Biennial Meeting to be held in Barcelona in September.

I now would like to invite you to read our articles on the above mentioned activities and many others including from our NMOs. Please continue to share your stories with the IPOPI team for inclusion in the next edition of e-News.

Wishing you happy reading and best wishes for the coming Summer or Winter season -depending on where you live in the world.

I am looking forward very much to seeing you all in Barcelona.

Jose Drabwell