Inborn Errors Working Party (IEWP)

IEWP Newsletter August 2020

by Arjan Lankester

Dear colleagues and friends,

First of all, I hope you and your families are doing well in these unusual times. I would like to take the opportunity to give you a short update on current and planned IEWP activities.

First, I would like to mention two very important IEWP studies that have been recently published.

Haematopoietic Cell Transplantation in Chronic Granulomatous Disease: a Study on 712 Children and Adults. Chiesa et al. Blood. 2020 Jul 2:blood.2020005590

Extended clinical and immunological phenotype and transplant outcome in CD27 and CD70 deficiency. Ghosh S, Köstel Bal S, Edwards ESJ et al. Blood. 2020 Jun 30:blood.2020006738

Many of you have contributed to these studies and I would like to thank you all for your input in this true team effort. It is our aim to continue this type of collaborative studies, supported by ESID, EBMT and SCETIDE registries, and other partners worldwide.

On July 8-10, IEWP has participated in the EBMT Midterm Focus Meeting (MFM) on “HSCT in non-malignant diseases”. This first IEWP virtual event was a joint initiative of IEWP, SAAWP, PDWP, and the Nurse Group. A large series of pre-recorded presentations was combined with very well attended live Q&A sessions with more than one hundred participants per session. I would like to thank especially the IEWP speakers for their excellent contributions in the sessions on Immune Dysregulation and Non-SCID Primary Immune Deficiencies.

During the virtual Annual EBMT meeting, IEWP will have its sessions during Paediatric Day on September 1st, and I hope you will be able to join us and listen to our colleagues’ contributions. 

As previously announced, because of the covid-19 pandemic, we will not be able to have our annual autumn meeting. Still, we consider it very important to keep in contact, share experiences and exchange ideas. Therefore, to replace the planned IEWP EBMT/ESID annual meeting in Milano, we have scheduled a virtual “extended IEWP business meeting” on September 25th, 3-6 pm CET. During this meeting we will have two scientific presentations by the Milan team followed by a business meeting in which we will update you on IEWP activities, studies, study proposals etc. Please contact me when you are interested to participate. A detailed program of the business meeting will be made available in the second half of August. In 2021 we hope to be able to meet live in Milano.

Finally, we look forward to the first ESID virtual meeting in October in which we will have our IEWP sessions with very interesting contributions by our colleagues

Despite the complex circumstances, I hope you will all be able to enjoy a good summer holiday period, and I look forward meeting you during the various scheduled remote events.

Best wishes

Arjan Lankester, chair IEWP ( )