JUN 30, 2105

From the Chairsperson’s desk

Dear friends,

In this issue of e-News we bring you news on IPOPI actions which have taken place in the last couple of months in Africa, Asia, Europe, and many more places and regions as IPOPI supported the organisation of 18 national NMO campaigns during World PI Week 2015!

We were delighted to collaborate once again with the African Society for Immunodeficiencies (ASID) and organise an IPOPI regional patients’ meeting during the ASID congress which took place in Algeria in May. The meeting was highly successful and brought together IPOPI’s NMOs in the region (Morocco, Egypt, Senegal, South Africa and Uganda) as well as representatives from new countries and potential NMOs such as Algeria, Benin, Sudan and Zambia. I would like to thank my colleague Martine Pergent, IPOPI’s Vice-Chair, for her invaluable support and determination to make this meeting a real success. A call for action for the region was launched and IPOPI will be following up with all attending countries to ensure we build on this meeting’s momentum and continue to increase advocacy efforts for the PID community in this great continent.

18 national campaigns were supported during World PI Week 2015 in the following countries: Spain, France, Morocco, Serbia, Ukraine, Iceland, Romania, Finland, Netherlands, India, South Africa, Malaysia, Malaysia, Colombia, Portugal, Canada, Italy and Poland. IPOPI was represented in Asia during World PI Week where the first ever Indonesian PID patients-doctors’ meeting in Jakarta took place in collaboration with Cipto Mangunkusumo Hospital (CMH) and the Faculty of Medicine Universitas Indonesia (FMUI). The event brought together 55 participants from various regions in Indonesia including patients, family members, Indonesian doctors and guest lecturers from The Netherlands and Malaysia. The launch of a National Indonesian patient organisation and the creation of a network between the different PID treatment centres to share diagnostic facilities were among the key decisions taken at the meeting.

I also wanted to seize the opportunity of this e-News to congratulate Professor Surjit Singh (Member of IPOPI’s Medical Advisory Panel) and his colleagues in Chandigarh, India. Recently the Department of Health Research, Government of India and the Indian Council of Medical Research (ICMR) have sanctioned a Centre for “Studies for Diagnosis, Research and Therapy of Primary Immunodeficiency Diseases” at Professor Singh’s institute in Chandigarh. The initial commitment and related funding is for a period of 5 years. Prof Singh and his colleagues had been pursuing this facility for a long time. This centre will be the first of its kind in India and will enable to develop, amongst other things, in-house facilities for molecular diagnosis of PIDs.

In Europe, IPOPI has been actively working on various fronts between the organisation of the upcoming 6th IPOPI PID Forum at the European Parliament and the launch of an advocacy campaign in Italy. IPOPI actively participated in the SCID newborn screening European Expert Meeting held in Vienna on 5-6 June. The meeting brought together European and International experts in the field of SCID, as well as experts working in the screening laboratories and representatives from the International Society for Neonatal Screening and IPOPI. Johan Prévot, IPOPI’s Executive Director and member of the European Expert Steering Committee on SCID NBS provided the patient perspective in these important discussions including future advocacy programmes. Many exciting pilot programmes are now taking place in Europe and Israel has recently launched a national SCID newborn screening programme. In order to reflect these developments IPOPI has launched a SCID newborn screening web-based interactive global map providing key information on the status of newborn screening in different countries.
The ESID registry working party also held their 7th meeting in Freiburg, Germany, on 22 April to discuss key operational aspects of this online Registry. IPOPI is pleased to be collaborating and providing the patient expertise in these highly valuable European platforms.

I would also like to  take this opportunity to remind you that you can still register at the early bird rate (early bird deadline extended until 17 July) for the 2nd International Primary Immunodeficiencies Congress (IPIC 2015) which IPOPI will organise in Budapest on the 5/6 November.
The congress scientific programme is now finalized and we cannot wait to see all of you there to discuss key clinical care developments in the PID field. For more information log on to our congress website www.ipic2015.com

Lastly I would like to extend a warm welcome to IPOPI’s two newest national member organisations: Senegal, Slovakia and Puerto Rico!

Best wishes,

Jose Drabwell
Chairperson, IPOPI