INGID News December 2023

E-Reports

IPIC 2023

INGID had a great meeting at IPIC 2023, meeting old friends and new. It has been a while for the board to meet in person, so it was great that nearly all the Board manage to attend. The sessions at the congress were mixed and varied so something for everyone. The stand was well attended, and we managed to sign up some new INGID members.

INGID participated in the guided poster walks, led by Ruchi Saka and we had a great representation and attendance, it was a great idea to have the headphones so we could hear the speakers present their posters. The topics covered nurses’ perspectives on PID diagnosis and management it was fascinating to learn about other countries management of patients.

We had a nurse speaker on the main agenda presenting a nurse’s perspective regarding Managing Malignancies in PIDs, many thanks to Emily Carne, who gave an excellent presentation and increased the awareness of how important nurses are to patient care.

Mary-Louise Daly was the nurse panelist for the ethical dilemma session – “Do We Really have a Choice”, which led to several fascinating discussions regarding patient care and advocacy.

The Dutch nurses coordinated the INGID Nurses Session and gave an introduction and overview of their national activities which led to a lively and interactive session. Many thanks to all the Dutch nurses for making us feel so welcome and for organising such a great session.

LASID 2023 Report

Rosalind Fisher, Patricia Luck, Julia Hews-Girard and Andrew Symes all from INGID were delighted to be invited to Mexico City by the Latin American Society for Primary Immunodeficiencies (LASID).

INGIDs participation at LASID was possible thanks to very generous sponsorship by CSL Behring.

It was a great honour for INGID to be invited to speak at the Inaugural Ceremony and Rosalind Fisher (President of INGID) introduced INGID emphasizing how happy we were to be in Mexico providing a program for nurses. INGIDs activity over the past 2 years was described in detail.

Rosalind Fisher presented a Practical Workshop on SCIG during the INGID symposium and Patricia Luck presented the preliminary results on Nursing Interventions from her PhD, both talks were well attended and generated much discussion.

The INGID Stand was very well attended, and we were able to network with many of the conference attendees.

Andrew Symes presented Transitioning Teenagers to Adult Care, and his experiences in setting up a clinic at the CSL Behring symposium and Julia Hews-Girard presented Shared Decision making in Transition aged Adolescents.

Attending LASID was an amazing opportunity for INGID and we received very encouraging feedback, the attendance at the conference was high and there were many opportunities for INGID to connect with healthcare practitioners in South America. We would like to extend our warmest congratulations to the organising committee of LASID for such a successful conference.

EDUCATION AND RESEARCH NEWS

News from the Research and Development Committee

In collaboration with the Education Committee, we are offering three webinars on “How to write an abstract”. One will be in French, two in English. You will receive an email End of January giving you all the information needed and providing a link to register for a webinar. The webinars are going to be 30 minutes of presentation followed by a 30-minute Q&A session, but please note we are not able to provide individual advice regarding data collection, analysis and other research related procedures. The presentation part will be recorded and a link to the video shared with the registered members.

The dates for the webinars are:

  • February 21st00 CET held by Prof. Ann Gardulf in English
  • March 7th00 CET held by Prof. Julia Hews-Girard and Patricia Luck in French
  • April 16th00 CET held by Prof. Ann Gardulf in English

English support for non-native speakers with their abstract:

We hope to provide support to our members who are not native English speakers. It would be great if native English speakers would volunteer to proofread the abstract of a non-native speaker. The abstracts for proof-reading would have to be submitted one month before the official deadline, to give the proof-reader enough time. Please note, the feedback would only focus on the language and not on content. If you are a native English speaker and willing to volunteer to proofread an abstract, please contact until End of January.

Rosalind Fisher presented a Practical Workshop on SCIG during the INGID symposium and Patricia Luck presented the preliminary results on Nursing Interventions from her PhD, both talks were well attended and generated much discussion.The INGID Stand was very well attended, and we were able to network with many of the conference attendees.

News from the Education Committee

Thank you very much to all the members taking time to fill out the questionnaire on educational needs! We are going to share a short video summarizing the results and the resulting planned actions with you. The video will be uploaded End of January.

Due to lacking resources the next Journal Club is planned for May.

ERN RITA

We are working towards a collaboration on educational activities between INGID and the ERN-RITA group. This is the European Reference Network that aims at improving the care of patients with Rare Immunological Disorders.

Please see their website for details of upcoming webinars:

https://ern-rita.org/webinars

Attending LASID was an amazing opportunity for INGID and we received very encouraging feedback, the attendance at the conference was high and there were many opportunities for INGID to connect with healthcare practitioners in South America. We would like to extend our warmest congratulations to the organising committee of LASID for such a successful conference.

Upcoming Events:

ESID/INGID/IPOPI CONFERENCE MARSEILLE 2024

Conference in Marseille 16-19 October 2024

Please save the date for the European conference of INGID/ ESID / IPOPI, which will take place in Marseille from October 16th until 19th. We are already working on providing different opportunities for you to apply for funding. This year there will be two kinds of grant, one for members presenting at the conference and educational grants to enable members to participate and those will be asked to write a short summary of their experience after the conference. In late spring/ early summer we are going to advertise the different grants and give further information on the application process.

The abstract submission opens soon, and we are sure many of you work on interesting projects in research but also in clinical development, please consider submitting an abstract.

We are in discussion to provide a simultaneous translation during the conference, as we hope to organize the program bilingual with presentations in French and English.

And INGID is going to celebrate the 30-year anniversary at the conference! We hope to see many of you in Marseille and are already looking forward to the conference.

French speaking INGID members are invited to step forward voluntarily for the upcoming Marseille conference 2024.

Please take advantage of the sponsorship and educational fund offers that INGID advertise so you can attend the conference. For more details contact conference secretary Mary Louise 

HAESI 2024

4th National Conference of Hereditary Angioedema Society of India is set to be held on 18th -19th May 2024 at Chandigarh, India with international faculties and expertise abstracts across the globe. For more details contact Conference Organizing Secretary Ruchi Saka
 

AUTOIMMUNITY 2024

14th International Congress on Autoimmunity will be held at Ljubljana, Slovenia between May 17-20, 2024. For registration visit autoimmunity.kenes.com

CGD Day 2024 (REMINDER)

All immunology nurses are welcome, for further information please see here: https://courses.gosh.org/event/CGD2024

Please note that it is through hybrid mode, so people can attend remotely too.

World PI Week

INGID Board members managed to pose at IPIC 2023 a Y for the awareness of World PI week for their 2024 campaign. Ideas are welcomed for WPIW Campaign 2024 theme suggestions.

Do subscribe to World PI week Newsletter and receive 15 e-blasts per year.

For more details contact Sary Workman

Other News…

INGID President Rosalind has successfully delivered an expert talk at European Parliament on Mental Health challenges among PID.

Rosalind Fisher was invited to the PID Forum on Mental Health and PID’s on December 5th at the European Parliament in Brussels by IPOPI.  It was chaired by MEPs from Spain and Czechia.

Rosalind travelled to Brussels and gave a talk on nursing interventions which support the mental health of PID patients.  There was an opportunity to illustrate to the European Parliament where our nurse membership is throughout Europe, and this demonstrated the variation and inequality of services throughout the region.

The psychological vulnerability of our patients through their lifelong journey and the vast range of nursing interventions were described in the talk. We were thanked for our participation in the event and received this feedback:

“Your presence enriched the discussions and contributed significantly to the success of this event.

The insights and contributions bring a unique perspective to critical issues like mental health, and we were proud to hear our speakers share their experiences on primary immunodeficiencies (PIDs) and how to improve the lives of European patients.

The diverse range of stakeholders that came together exemplifies the collaborative spirit needed to address challenges faced by individuals with PIDs. Together, we explored avenues within the European Commission’s provisions and how we could make meaningful strides in improving access to psychological support for all vulnerable groups.

As we look toward the future, we are excited about the prospect of continuing our collective efforts to enhance the well-being of European patients, regardless of their background or medical condition.”

Ingid wishes to thank IPOPI for this opportunity to take part in the PID Forum.

INGID is a great opportunity to learn how other countries manage their patients, meet other nurses, and increase awareness of PID.

INGID is thankful to all the members across the globe for making the year 2023 a grand success and need members support to grow INGID better.

Please feel free to contact any member from the INGID board.

Wishing you all Merry Christmas and a Happy New Year 2024

Warm wishes
Ruchi Saka