News@ESID - November 2021
Dear Friends, Dear Colleagues, ESID-members,
I hope you and your family are all well and that you are able to enjoy the beautiful autumn colors or the promise of summer in the southern hemisphere. Despite the unusual circumstances, still preventing us to meet and interact the way we used to, the ESID board and society have been more productive than ever, in many fields. Please read this letter through until the end and discover new opportunities and calls for active participation in the society’s activities.
The 2021 ESID meeting on Immunological Consequences of Targeted Immunotherapies was a success with 1081 delegates joining the various sessions. I want to thank once again Siobhan Burns and Andy Gennery, all speakers, presenters and chairs for their dedication and contribution. Be reminded that the congress material is available until December 29th and do reach out if you wish to contribute to the guidelines which should help us in better diagnosing, monitoring and managing secondary immunodeficiency.
Unfortunately, PID patients are still haunted by SARS-CoV-2. The first cycle of ESID Grand Rounds is therefore focused on the management of COVID19 in patients with PID. The sessions have been well attended and truly promote discussion and interaction on management, prevention, and vaccination. So far, the feedback is positive, and we are grateful for your engagement. The Junior WP is buzzing, as always, driven by the creative enthusiasm of Clara Franco. Be on the watch-out for the ESID junior videos, for the Journal Clubs and more
The Inborn Error WP chaired by Michael Albert hosted a fantastic meeting with EBMT, chaired by Bénédicte Neven, in beautiful Milan. The IEWP guidelines were also for the first time published as a manuscript and I am convinced patients around the world will benefit from this important clinical practice guideline. Congratulations to all involved for your commitment and perseverance.
It’s Autumn, yes, but Educational WP’s chair Despina Moshous, is getting ready for the Summer School, to be held in Athens. Stay tuned! Anne Puel and the Genetics WP will host a meeting on genetic diagnosis of PID – read all about it in her message below. The PID in development WP with Joao Neves is anxiously anticipating to give the green light for the long awaited Winter School. Don’t miss out on yet another exciting ESID activity.
The ESID Registry has been a point of attention for some time, but we are now truly switching up gears, with Hila Edry as the recently appointed ESID Registry Manager. Mikko Seppänen and the Registry Steering Committee can count on her assistance and skill to take the next steps with the Registry.
Eleonora Gambineri will focus on reshaping the membership structure and on revising our website content.
ESID cherishes the close collaboration with IPOPI on many issues of direct importance to the patients, as many challenges persist and new arise. A recent update of the joint statement on COVID-19 in children and adults with PID is now available. Moreover, IPOPI spearheaded the launch of SCREEN4RARE, a multi-stakeholder campaign led by IPOPI, with the International Society for Neonatal Screening (ISNS) and ESID. The aim of Screen4Rare is to exchange knowledge and best practices on newborn screening for rare diseases with the ultimate objective to ensure that all babies born in the EU can have equal access to newborn screening as a life-saving tool.
On 14 September, representatives of the European Commission, European References Networks (ERNs), and Screen4Rare officially launched the ERN Expert Platform for Newborn Screening. We will focus on three main work streams: 1/ identifying gaps and differences in NBS in EU member states 2/ case definitions for NBS and confirmatory testing 3/ Inventory of registries and study of interoperability. We are looking for PID experts to join these workstreams and to develop a strategy and outline. If you are interested, please drop a line!
ESID wouldn’t be ESID without the navigation skills of Stefano Volpi, our treasurer and Fabio Candotti, your future president. Thanks to their skillful budgeting, ESID was able to support Dr. Himanshi Chaudhary with a short term fellowship, and Dr. Lucia Peinaro and Dr. Alba Parra-Martinez with the new ESID bridge grant. Moreover, Dr. Verena Hafner and Dr. Martha Benavides-Nieto Received an ESID Research Grant of 98,000€ and 49,374€ respectively. They will present their research outcomes at one of the upcoming ESID meetings.
As you see, we are working hard to make your membership more valuable each year. Do not forget therefore to renew it so you can continue enjoying the member benefits and more importantly, this way you will also be updated on the planning of what promises to be a grand celebrative biennial meeting in Gothenburg from 12-16 October 2022. Anders Fasth and Olov Ekwall have prepared for you an enticing and top-notch programme.
Finally, I want to invite you to take the time to read the WP Chairs contributions. I am grateful to you all as I feel there is a true partnership, in times when positive energy and dynamic collaboration have never been more important. I would like to thank you all for supporting ESID and its activities and wish you a safe and healthy onward par course in these few more months of 2021.