IPOPI Global Patients Meeting 2020

Welcome to the online XVI IPOPI’s Global PID  Patients Meeting!

The XVI IPOPI Global PID Patients Meeting was planned to take place this year in Birmingham, UK, between October 14-17, back to back with the European Society for Immunodeficiencies (ESID) and International Nursing Group for Immunodeficiencies (INGID) biennial meetings. The COVID-19 pandemic has made us adjust our plans and move this meeting into a virtual format.

The 2020 Global PID Patients Meeting will take place on October 15 and 16, between 13h and 17h30 CEST.

Nothing replaces in-person interaction but this meeting is cost free, doesn’t require traveling and several members of your NMO can attend! We look forward to getting together with all of you so be sure to check the programme and register!

See you soon!

Wednesday 14 October 2020, 16h45-17h30 CEST

Time Presentation Speakers/Moderators/System
Opening Session (on ESID system) ESID Congress system – have your user/pass at hand
17:20 – 17:35 ESID, IPOPI & INGID Opening Ceremony Martine Pergent

Day 1: Thursday 15 October 2020, 13-16h30 CEST

Time Presentation Speakers/Moderators
13:00-14:00 Session 1: Welcome Session IPOPI Zoom meeting
13:00 Welcome, introduction & ice breaker Martine Pergent
13:20 IPOPI Global Perspectives Presentation Johan Prevot
13:35 The coming decade from the scientific and medical perspective Dr Nizar Mahlaoui
13:50 Q&A Live
14:00-14:45 Session 2: Bad Bugs – Managing infections  ESID Congress system – have your user/pass at hand
14:00 Welcome, introduction & moderation Jose Drabwell
14:05 Lessons learnt from COVID19 Dr Stuart Tangye
14:20 Managing specific infections (bacteria and viruses) in PID – how do we tackle them? Dr David Lowe
14:35 Q&A ALL (live)
14:45- 15:15 30 min break
15:15-16:20 Session 3 (sponsored by Takeda) – Living life with PID: from childhood to ageing ESID Congress system – have your user/pass at hand
15:15 Welcome, introduction & moderation John Seymour
15:20 What do we mean by transition care? Dr Nizar Mahlaoui
15:30 ERN-RITA transition survey & regional challenges Dr Siobhan Burns
15:45 Supporting patients’ needs through Patients Council validation Lillian Ng, Takeda
16:00 From the principles of care to the PID Life Index Martine Pergent
16:10 – 16:20 Q&A Live
16:25-16:45  Luciano Vassalli Award Ceremony  IPOPI Zoom meeting
16:25 Presentation of the Luciano Vassalli Award by Christine Jeffery
16:30 Winner speech

Day 2: Friday 16 October 2020, 11:00-17:00 CEST

Time Presentation Speakers/Moderators/
10:45- 12:15 ESID-INGID-IPOPI Joint Session
Quality of Life and Patient’s Perspective ESID, INGID and IPOPI representatives
13:00-14:00 IPOPI Annual General Assembly Closed session, separate registration needed.
IPOPI Zoom meeting 
13:00 Welcome, introduction & moderation Martine Pergent/Johan Prevot
AGM agenda is circulated separately. The IPOPI AGM is only open to IPOPI’s NMOs!
14:00-15:10 Session 4 – PID crossovers  ESID Congress system – have your user/pass at hand
14:00 Welcome & set the scene Bruce Lim
14:05 Secondary immunodeficiencies Dr Silvia Sánchez-Ramón
14:25 Auto-immunity and auto-inflammation Dr Virgil Dalm
14:45 Allergy Dr Joshua Milner
15:00 Q&A Live
15:40           30 min break
15:40-16:40 Session 5: Grow your NMO (on ESID system) ESID Congress system – have your user/pass at hand
Session moderators: Christine Jeffery & Martine Pergent (5 min introduction)

Topics: 30 min in break out rooms
Presentation of findings: 5 min per group

How to lead an NMO: be an effective stakeholder Topic moderators: Andrea Gressani Case study: Case study: ARPID (Romania)
How to engage young people: next generation leadership Topic moderators: Bruce Lim Case study: AIP (Italy)
How to get involved in Clinical Trials and medical research Topic moderators: Jose Drabwell Case study: DSAI (Germany)
How to advocate: make your case! Topic moderators: John Seymour Case study: CIPO (Canada)
How to lead a PID patient group in a low-income country Topic moderators: Martine Pergent, Case study : FIDEP (Bolivia)
Presentation of findings Topic groups representatives
16:45-17:00 LeBien Award Ceremony (on IPOPI Zoom) IPOPI Zoom meeting
16:45 LeBien Award Ceremony presented by Martine Pergent
16:50 Winner speech
17:05 Farewell remarks by Martine Pergent

This meeting was supported by IPOPI’s Corporate Partners: