Inborn Errors Working Party (IEWP)

News & Events

Clinical outcome and quality of life in patients with ARPC1B deficiency managed conservatively or with hematopoietic stem cell transplantation

Dear colleague,
we are promoting a collaborative study to assess clinical outcome and quality of life in patients with ARPC1B deficiency managed conservatively or with hematopoietic stem cell transplantation
Brief rationale of the project:
ARPC1B deficiency results in a combined immunodeficiency, characterized by recurrent infections, allergic manifestations, and platelet abnormalities with bleeding tendency. 

Although the only curative therapy currently available is haematopoietic stem cell transplantation (HSCT) there is a lack of data comparing the clinical outcome and quality of life of patients undergoing transplantation or treated conservatively.
In the Details.pdf attached you can find more informations about the project.
If you would like to participate and receive the Clinical Report Form (CRF) or have any questions about the study, please contact us at: 

Link to PDF

Minutes of the IEWP Annual Conference Sep. 22-24, 2023, Graz, Austria

Compiled by: Daniela Sperl, Markus Seidel
The authors and ESID exclude any liability for the content or its correct reproduction in terms of errors or mistakes as well as typos that may have occurred when taking notes.  

The Inborn Errors Working Party met for its annual meeting in Graz, Austria at a wonderful venue in the old city called Alte Universit├Ąt. The program contained cutting-edge scientific advances in the treatment of inborn errors of immunity, metabolism and hematopoiesis. More than 120 participants from all over Europe and as far away as Australia engaged in interactive discussions.

The Inborn Errors WP Annual Meeting will take place in Paris, France, September 23-25th 2022!

This year, the annual meeting of the Inborn Errors Working Party (IEWP) will be happening in Paris, France, September 23-25th 2022 as a face-to-face event.

Upcoming study announcement: natural history and HSCT outcome of patients with FHL2 and FHL3

Dear IEWP members, Soon there will be a retrospective study describing the natural history and HSCT outcome of patients with FHL2 and FHL3. Please await study initiation but be prepared to enter your patients via the ESID and EBMT registries. inclus...

WAS2022- Munich, Germany - Postponed!

 

Due to the ongoing COVID19 pandemic, we announce that The 3rd International WAS symposium will be postponed to June 17th, 2022 in Munich, Germany. This event will enable researchers and clinicians to meet, present and discuss their work in the area of WAS and WASp research. Abstract submission remains open! More details about the event are available at  www.was2022.org

Inborn Errors WP annual meeting

Dear colleagues and friends,  The inborn Errors working party held their annual in-person meeting in Milan 24-26 September, 2021. A report of the meeting can be found here: https://www.ebmt.org/ebmt/news/report-inborn-errors-working-party-annua...

IEWP Newsletter August 2021

Dear colleagues and friends, I hope all of you are still coping with this ongoing pandemic. At least vaccination gives us hope for some betterment. As you may have heard already, the new version of the IEWP HSCT guidelines has just been published in...

WAS2022- Munich, Germany - Save the date!

Following the cancelation of WAS2020 due to the COVID19 pandemic, we are happy to announce that The 3rd International WAS symposium will take place on Friday Mars 18th, 2022 in Munich, Germany. This event will precede the EBMT2022 and will enable researchers and clinicians to meet, present and discuss their work in the area of WAS and WASp research. More details about the event are available at www.was2022.org

Published: EBMT/ESID GUIDELINES FOR HAEMATOPOIETIC STEM CELL TRANSPLANTATION FOR PI

EBMT/ESID inborn errors working party guidelines for hematopoietic stem cell transplantation for inborn errors of immunity The fully revised EBMT/ESID inborn errors working party guidelines for hematopoietic stem cell transplantation for inborn errors...

Inborn Errors Working Party Annual Meeting

Dear Colleagues,  This year, the annu...