Inborn Errors Working Party (IEWP)
IEWP Newsletter - July 2014
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By Andy Gennery
As summer comes upon us, I would like to update you on some events and news since I last wrote.
Firstly, we have had two successful IEWP meetings in Milan at the end of March, and more recently a joint meeting with the Paediatric Diseases Working Party in Jerusalem in May – both were well attended, and there were some interesting presentations and abstracts.
In April, Bobby Gaspar led a workshop on Newborn screening for Severe Combined Immunodeficiency – we hope in due course to publish European guidelines on the implementation of Newborn Screening as well as guidelines on the approach to transplantation of patients with SCID, diagnosed through Newborn screening, and follow up of those who are picked up with low or absent TRECs but do not have SCID.
On 10th November, I have organized a workshop on “Thymic Disorders and Transplantation”, led by Graham Davies and Georg Hollander, The venue is Goodenough College, Mecklenburgh Square, London. Our Autumn meeting in Munich is in October – the programme looks very exciting, is already packed, and will no doubt change before October! We look forward to Alain Fischers Keynote presentation at that meeting.
The 16th Biennial ESID meeting is in Prague in November – details of that programme will be advertised in due course – look at the ESID website for updates.
I ask you to consider adding 'on behalf of IEWP' to other publications and presentations when appropriate (for instance, when presenting or publishing data from two or more IEWP centres, even if other non-IEWP centres are involved).
I have recently convened an “IEWP Studies Steering Committee”. The purpose of the committee is:
- To have an over-view of studies being performed by IEWP members on behalf of IEWP
- To help raise the profile of IEWP within EBMT
- To facilitate initiation and timely completion of IEWP studies
- To keep a register of current IEWP studies
- To plan future IEWP studies, particularly prospective studies
Members of the committee are as follows:
Alessandro Aiuti, Michael Albert, Stephan Ehl,, Bobby Gaspar, Andy Gennery, Tayfun Guengoer, Jaap Jan Boelens, Arjan Lankester, Nizar Mahlaoui, Benedicte Neven, Mary Slatter.
We will not be running the studies (except those that individual committee members have initiated), and any member of IEWP is welcome to suggest and lead studies – the purpose of the committee is to guide studies through to completion and help the Principle Investigator.
Finally, I will be asking you to e-mail the details of any posters or presentations given on behalf of IEWP to Roz Gale ( ) in the near future, so that she can collate figures for our record of annual activity.
I wish you a great summer and look forward to seeing you in the near future