IPOPI (International Patient Organisation for Primary Immunodeficiencies)   01-04-2020   https://mailchi.mp/b5a940138094/march2020?e=213bc260c3    


Under the current circumstances, the thoughts that come immediately to my mind go to all the people who are affected by the SARS-CoV-2, the health professionals who fight against this virus and all those who contribute to maintaining life “as normal as possible” in the countries where confinement is required.

We’re going through unexpected times where even those who are knowledgeable and experienced mainly say they don’t know enough and where our patient community is scared. This is the first time in a very long while that a virus sends the entire world into such a difficult situation to manage: facing a threat that we don’t know much about, that may be under estimated, that puts our health care systems in trouble, and where we all need to accept to learn as we go. This is true for the general population, and even more for PID patients.

See full Newsletter in the link above.




European Society for Immunodeficiencies: SARS CoV2, COVID19 and PIDs - survey for clinicians.

ESID (European Society for Immunodeficiencies).   16-03-2020   https://mailchi.mp/f173eda61e65/sars_cov2_covid19_pids-survey?e=75f6add614    


On behalf of ESID and on behalf of the IUIS Expert Committee of inborn Errors of Immunity we share this information to ask for your input in this important global initiative.

With the emergence of SARS-CoV-2 and the COVID-19 pandemic, there is an urgent need to understand the impact of infection on immunodeficient/immunosuppressed individuals.

The goal of the survey (the assembly of which was a multi-person effort, thanks to all who helped) which we would like to ask you to fill out is to capture the initial information to get an idea of the numbers of PID patients affected/infected with SARS-CoV-2, and the effect of infection on the patients.

Link to the survey: https://www.surveymonkey.com/r/67RBPNZ​
The survey will be open for 3 weeks with a potential extension.




NEWS@ESID - Winter Edition - December 2019

ESID (European Society for Immunodeficiencies).   23-12-2019   https://mailchi.mp/c9da40e27468/newsesid-winter-edition-december-2019?e=75f6add614    


Message from the President:

Dear Friends and Colleagues ESID Members,

Another year has come to its ending. The field of primary immunodeficiencies, or inborn errors of immunity, is still growing at tremendous speed. Despite the advances of improved molecular diagnosis, the clinical management of many primary immunodeficiencies is still extremely challenging. The various WPs within ESID truly are committed to aiding in this challenge as you can learn in the Chairs’ contributions to this Newsletter.

We also look back on a successful 2019 Focused Meeting – the theme “PID and malignancy” was timely and well received by the participants – it gave rise to novel research and clinical interests. Thanks again to the local SC and Jutte as a truly engaged local host.

See full Newsletter in the link above.





IPOPI (International Patient Organisation for Primary Immunodeficiencies)   16-12-2019   https://mailchi.mp/858c50c3af72/e-news-winter19-3087489?e=213bc260c3    


There is something about looking at another year, and even a new decade, that encourages reflection. On the past and on the future.

A look back to the last quarter shows our growing activities on awareness and advocacy and among these, we organized IPIC2019, the 4th edition of the International Primary Immunodeficiencies Congress!

IPIC2019 was held in Madrid and gathered numerous physicians and PID community stakeholders from 70 countries around a high quality scientific programme designed to review key diagnosis and clinical care developments in the field of PIDs. Science is incredibly fruitful in our field, as evidenced by the announcement that well over 400 genes have been identified by the IUIS who, in fact, have very recently published their new classification describing 456 PIDs.

See full e-News Winter 2019 in the link above.




ESID Summer School for Primary Immunodeficiency Diseases: 14-17 May 2020, Dolce Attica Riviera, Athens (Greece).

ESID (European Society for Immunodeficiencies).   02-12-2019   https://mailchi.mp/d7bbfa4f5755/esid-2018-summer-school-apply-today-2654411?e=75f6add614    


If you are inspired by a career in the field of primary immunodeficiencies, whether in the clinic, the lab, or a combination, this will be an excellent opportunity to update your knowledge, hear about the latest diagnostic tools, and learn from leaders in the field who see and manage patients from the whole spectrum of primary immunodeficiency. You will also benefit from networking and socialising with your peers.

Applications OPEN: From 2 December, 2019 until 6 January, 2020.



ESID mentoring_logo

ESID Mentoring Programme for Primary Immunodeficiencies.

Clara Franco Jarava (ESID Juniors Working Party Chairperson)   16-11-2019   https://mailchi.mp/a42212b0c9a2/esid-mentoring-programme-2020-2654407?e=52180fe7b0    


The purpose of the programme is to facilitate that promising individuals starting in the world of PID develop into successful professionals in those regions where the awareness and visibility of PID is yet poorly represented. Mentors should have enough experience in diagnostic/treatment/research in Primary Immunodeficiencies and a wish to share his/her knowledge with Junior researchers.

See all details in the link above.




IPOPI: e-News Autumn 2019.

IPOPI (International Patient Organisation for Primary Immunodeficiencies)   27-09-2019   https://mailchi.mp/193ebc0b5cd8/e-news-autumn19-3010485?e=213bc260c3    


We are stronger together than when we are alone! This old principle turns out to be truer than ever! Thanks to a successful joint application by IPOPI and IUIS (International Union of Immunological Societies) and the support of numerous medical and scientific societies, PID diagnostic tests have been included in the World Health Organization (WHO)’s Essential Diagnostics List (EDL) published on July 9, 2019. Our most sincere thanks go to the doctors from all the continents who helped in providing the advice and data that were needed to help IPOPI prepare the submission to WHO and fulfill all necessary requirements. We are delighted by this first result that put PID diagnostics on the map. Similarly to the WHO List of Essential Medicines, the WHO EDL aims to facilitate access to diagnosis by providing evidence-based guidance to countries. But we want to go further...

See full e-News Autumn 2019 in the link above.





ESCCA Board   13-09-2019   https://www.escca.eu    


Find attached the newsletter (September 2019) of the European Society for Clinical Cell Analysis (ESCCA).




IPOPI: Congreso IPIC 2019 (6-8 November, Madrid): 212 approved abstracts for poster presentation.

IPOPI (International Patient Organisation for Primary Immunodeficiencies)   07-09-2019   https://mailchi.mp/65f969be5da5/212-approved-abstracts?e=66f6ac33e7    


The IPIC2019 Organising and Scientific Committees have carefully reviewed all abstracts and approved 212 for poster presentation, a 21% increase from 2017. The 3 best posters have now been identified: 1st place: Dr. Del Pino Molina, L. (Spain) / 2nd place: Dr Karim, F. (netherlands) / 3rd place: Dr Raki Shirzad M. (Iran). The winners will be awarded a monetary prize and a dedicated session.




NEWS@ESID - Summer Edition - August 2019

ESID (European Society for Immunodeficiencies).   02-09-2019   https://mailchi.mp/kenes.com/newsesid-spring-edition-august-2019?e=75f6add614    


Message from the President:

Dear colleagues and friends,
Time flies and September is approaching. If you took time off, I hope you enjoyed nice and refreshing holidays. With the Focused Meeting in Brussels literally around the corner, I welcome you all wholeheartedly, not only for the special focus on malignancy but also because you will get updates on recently described PID as well as some truly exciting unpublished work. Moreover, it is especially nice to welcome you to ESID in Brussels, the city where I was born, in my home country.

We are also working intensively with Aarn Huissoon and Peter Arkwright to prepare at least as nice a Biennial Meeting in Birmingham. Stay tuned and block out your agendas already for October 14-17, 2020.

As communicated in a previous letter, we have also worked on a draft strategic plan for ESID, starting to define and redefine our vision, mission and priorities as a society.

See full Newsletter in the link above.