Inborn Errors Working Party (IEWP)

IEWP Newsletter - December 2013


The IEWP held a very successful autumn meeting in Leiden, Netherlands. A highlight was listening to Jaak Vossen talk about the first transplant for PID performed by him and his team in 1968 - truly pioneering work. It is important to understand our history, recognise where we have come from, and how far we have travelled. Marina Calva-Cavazzano gave an inspirational vision of where the future of stem cell therapy for PID may lie. It was great to welcome friends from all around Europe and beyond, and we were pleased that colleagues from the US and Japan were able to contribute to our meeting. Thanks to Arjan Lankester and Robbert Bredius for hosting us in a great venue. I have just returned from the 1st International Primary Immunodeficiency Congress, organised by IPOPI, and held in Lisbon, Portugal. Primary Immunodeficiency physicians (paediatric and adult), nursing and industry colleagues and families and patients were all on attendance. Amos Etzioni and Alain Fischer gave excellent overviews, and there were many excellent presentations - the focus was more clinical than that of ESID. The meeting was excellent, with many juniors physicians and colleagues from developing centres in attendance. The next meeting will be in Budapest in two years.

The next diary dates are EBMT in Milan, March 29th- April 2nd - the abstract deadline is 15th December. We have a joint Paediatric Day with the PDWP on 1st April. In May 21-23, 2014, the PDWP/Peadiatric Nurses meeting will be held in Jerusalem, Israel, more details will be available soon. Our autumn meeting next year will be in Munich, hosted by Michael Albert. The date has not yet been finalised, details to follow.

Congratulations to Tayfun Gungor in publishing the study on targeted busulphan conditioning for CGD in The Lancet, on behalf of IEWP - a great effort. I know that several other studies are also underway on behalf of IEWP members.

Finally Bobby Gaspar will be convening a working group to look at issues regarding implementation of Newborn Screening programmes for SCID. A number of people have expressed an interest in being involved with this important piece of work, and will be contacted in the near future.

I look forward to seeing you in Milan at EBMT.

Best wishes,

Andy Gennery

Chair IEWP