October 13, 2017

From the Chairsperson’s desk

From the chairperson’s desk

IPOPI has been working very hard over the summer in order to prepare for the 3rd International Primary Immunodeficiency Congress (IPIC2017) which will be held in Dubai on November 8-10 2017.  We are very excited about the location as this will be the first congress outside Europe and we are looking forward to welcoming many delegates especially those from countries nearer to Dubai. During this IPIC congress key clinical topics aimed at the primary immunodeficiency community will be explored in an exciting programme featuring leading key medical and scientific opinion leaders. On Thursday evening, November 9, a Desert Congress Dinner will be held at the Al Sahara Fortress, a unique venue in a nature reserve in the Dubai desert, just a 25 minutes’ drive from the iconic Burj Khalifa tower. The congress will also be the perfect occasion to celebrate IPOPI’s 25th Anniversary as well as to unveil one of IPOPI’s latest patient support projects. Registrations are currently pouring in, so in order to guarantee your place at the congress and benefit from attractive registration rates I encourage you to register before our registration deadline on October 25th. After this date, only on-site registrations will be available. For the latest information on the congress be sure to visit our congress website at www.ipic2017.com

Of course, the congress has been one of many other projects IPOPI is currently working on. In this edition of e-News you will be able to read about some of our latest activities including our participation at the first general meeting of the European Reference Network on immunodeficiency, autoinflammatory and autoimmune diseases (ERN-RITA) held in Edinburgh on September 12 back to back with the annual ESID conference as well as our recent collaboration around the evaluation of the Blood Directive. IPOPI was very pleased to actively take part in collaboration with our friends at PLUS (Platform of Plasma Protein Users) in the recent Stakeholders Event organised by the European Commission on the Evaluation of the Blood, Tissues and Cells legislation. Recent meetings attended by IPOPI staff and board members were the 10th Moroccan PID Congress and the LASID meeting in Sao Paolo, reports about these two very interesting meetings will follow in our winter e-News edition.

I am also delighted that the RECOMB consortium application was recently accepted and approved for funding under the EU Horizon 2020 programme. The RECOMB project will complement the SCIDNET project in which IPOPI is a supporting partner organisation, by aiming to make gene therapy for children affected by a Severe Combined Immunodeficiency: Recombinase Activating Genes (RAG1) deficiency a reality. On the topic of SCID, IPOPI is also making great progress with its SCID advocacy campaign in countries such as the UK and Spain getting closer and closer to national implementation. This campaign has been a step by step effort in close collaboration with our key doctors and stakeholders but promises to deliver great outcomes in the near future in the EU.

As always, we would like to take the opportunity to update you in this new edition of e-News on the various campaigns and activities led by IPOPI’s active membership and hope you will enjoy reading the numerous articles about the latest national initiatives led by our patient community.

Lastly, it is with great sadness that IPOPI learnt about the passing of a leading PID figure Dr David Webster, he was instrumental in establishing services for PID patients in the UK and had been a great advocate in encouraging diagnosed patients to be as active as possible and to live a normal life. IPOPI wishes to express its most sincere condolences to his family and loved ones.

With my best wishes to all our readers and hope to see many of you in Dubai.

Jose Drabwell