INGID News April 2024

ESID/INGID/IPOPI CONFERENCE 2024

We are delighted to invite you to the 21st Biennial ESID/INGID/IPOPI Meeting to be held 16-19 October 2024, in Marseille, France.

The theme for the meeting will be “Human Inborn Errors of Immunity: An Expanding Universe”.

Planning is now well underway, and we will be bringing you an exciting INGID programme bringing together international nurses and specialists in immunology.  There will be keynote talks, educational sessions, symposiums, poster presentations, interactive sessions, a debate and a round table lunch all included in our programme.

The first day of the meeting will be dedicated to our educational programme.

There are many opportunities for you to be involved and we are actively seeking potential speakers for which we are hoping to offer funding.  All of the information is available on the web-site and we are accepting submissions until April 30th.  Please note we are hoping to provide a translation service throughout the conference.

We will be celebrating INGID’s 30 year Anniversary during the conference with an evening event on Thursday 17th October.  

For further information about the conference please visit: https://esidmeeting.org

News from the Research and Development Committee

In collaboration with the Education Committee we are offering the third in our series of webinars on:

“How to write an abstract” to be held on April 16th 16.00 CET given by Prof. Ann Gardulf in English. It will be 30 minutes of presentation followed by a 30 minutes Q&A session, This is the registration link for all those who have not yet registered and would like to participate or receive the video:
REGISTRATION LINK
This is a fantastic opportunity to help members with their preparation for submitting abstracts. If you are working on interesting projects please consider submitting an abstract. The closing date for submission of abstracts is: 7th May 2024.

ESID Grand Round Webinar on 9th January 2024

ESID held a webinar in January focusing on transition from pediatric to adult clinics and invited two INGID members to join as speakers, as well as a patient representative.

The session was moderated by Dr Nizar Mahlaoui and Prof. Siobhan Burns. There were five speakers who gave short talks on their field of expertise. Characterizing the main elements in the pediatric area were Dr. Pere Soler-Palacin giving the medical perspective. Reflection on extensive experience and learning of the nurse-led transitioning service was delivered by Paediatric Specialist Nurse Elizabeth Davis (INGID). The transition process after transferring to the adult setting, was delivered by Immunologist Dr.Vigil Dalm and Adult Specialist Nurse Marianne van der Ent (INGID). Additionally a patient recently ending her transition process gave her insights.

It was a very interesting and well received ESID Grand Round Webinar giving an overview on this multi-professional topic covering the different perspectives. 

We would like to thank ESID for the invitation to speak and the collaboration.

PID Forum at the European Parliament

On March 21st 2024 IPOPI organized the “PID Forum – Empowering the PID community Through Rare Disease Policies 2024-2029” at the European Parliament in Brussels. The panel was chaired by MEP Radka Maxovà (S&D Czechia) and moderated by Leire Solis (IPOPI, Health Policy and advocacy Senior Manager). The panel focused on the EU’s impact on rare disease patients and PID communities and had five speakers:

Wim De Geest, Belgian Patient Organization for Primary Immunodeficiencies, Chairman

Anne-Sophie Henry-Eude, IRIS Association, Patient Representative

Patricia Luck, University Children’s Hospital Zurich and INGID Vice President

Prof. Isabelle Meyts, KU Leuven, Lead of Laboratory for Inborn Errors of Immunity

Eva Varga, Hungarian Organization for Patients with Immunodeficiencies, Vice President

The diverse range of stakeholders gave an overview on different challenges faced by individuals with rare diseases and PID patients. IPOPI invited an INGID representative to support the topic with the nursing perspective. Patricia Luck participated and talked about PID management, newborn screening and supporting the lives of patients and their families.

Based on the panel IPOPI is working to put the discussions into actionable pledges, which hopefully can form the basis for the policymakers and organisations devoted to PID care. Through this Manifesto, IPOPI will continue to amplify the voice of patients towards the development of a comprehensive framework that supports individuals living with primary immunodeficiencies. As soon as the Manifesto is published, we are happy to share it with our members.

We from INGID would like thank IPOPI for their commitment and effort on a political level, the collaboration with our organization and the opportunity to take part in this PID Forum.

World Primary Immunodeficiency Week

Please do support it in your areas, see www.worldpiweek.org for more details and the 2024 World PI Week campaign toolkit is now available to download.

World PI Week

INGID are continuously working to improve immunodeficiency nursing and this is not possible without our members support. We would love to hear from you.

Please contact any member from the INGID board.

With warm wishes to you all

Rosalind and the INGID board.