Author | Lightnews

Johan Prevot @johanprevot.bsky.social · 7d

🧠 Rethink routine lab values!

💡Find out how Calculated Globulins can help reveal previously undiagnosed #PIDs — live on IPOPI’s upcoming Hard Talks webinar on 28 October!

👇👇👇 to register

IPOPI @ipopi.bsky.social · 8d

🧬 IPOPI Hard Talks is next week!

Register here: app.livestorm.co/ipopi/ipopi-...

Join us for an insightful session on the Clinical Application of Calculated Globulin Screening, featuring Prof Stephen Jolles and Dr Cecilia Poli, both experts in primary and secondary immunodeficiency management.

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IPOPI @ipopi.bsky.social · 8d

📢 The IPOPI 2024 Annual Review Report is now live!

Explore the key moments, global events, and new initiatives that helped IPOPI grow stronger in supporting people with primary immunodeficiencies worldwide.

👉 Read the full review here: ipopi.org/2024-annual-...

#IPOPI #AnnualReview

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Johan Prevot @johanprevot.bsky.social · 11d

A well deserved honour for @ipopi.bsky.social Medical Advisory Committee's Vice Chairman Prof Martin van Hagen in recognition of his contributions to the field of clinical immunology & decades of dedication to our #PID patients community. Bravo Martin! More info: tinyurl.com/jwtdnv4f

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Johan Prevot @johanprevot.bsky.social · 12d

Day 2 at the @EAPSCongress features a 👍 session on "Challenges in managing #immunodeficiencies" with talks on managing #PID #IEI in the ER by Dr Pere Soler-Palacin; Dr Fabien Touzot on diagnostic challenges of ALPIDs & on genetic susceptibility to infections by Dr Colobran Oriol

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Johan Prevot @johanprevot.bsky.social · 12d

It was great to join my colleague Dr Jacques Rivière at the EAPS Congress in Lisbon during a session on patient engagement in scientific research to talk about @ipopi.bsky.social extensive experience on this topic, highlighting challenges & opportunities!
#ESID #ERNRITA

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IPOPI @ipopi.bsky.social · 16d

🎉 IPOPI President @martinepergent.bsky.social took part in the Opening Ceremony of the @lasidofficial.bsky.social Meeting, marking the official start of this inspiring congress.

A wonderful moment of collaboration and shared purpose between patient leaders and medical experts!

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Johan Prevot @johanprevot.bsky.social · 12d

Such a well deserved recognition! Congratulations Martin!!

IPOPI @ipopi.bsky.social · 15d

👏 We are proud to celebrate and announce that Professor Martin van Hagen, Vice-Chairman of IPOPI’s Medical Advisory Panel (MAP), has been appointed as Officer of the Order of Orange-Nassau by His Majesty the King of the Netherlands.

#IPOPI #RoyalHonor #ClinicalImmunology #HealthcarePioneer

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IPOPI @ipopi.bsky.social · 15d

📸 Day 1 at the Latin American PID Patients Meeting was full of energy and meaningful exchanges!

A great start full of knowledge, collaboration, and ideas to drive progress for people living with PIDs in Latin America! 💙

Made possible with the support of: CSL & Grifols

#IPOPI #PID #LASID2025

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IPOPI @ipopi.bsky.social · 14d

💙 Day 2 of the Latin American PID Patients Meeting brought us closer together – patients, doctors, partners and advocates united in strengthening PID care and awareness.

Thanks to CSL and Grifols for the support.

#IPOPI #PID #LASID2025 #BuenosAires #PrimaryImmunodeficiency #PIDAdvocacy

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IPOPI @ipopi.bsky.social · 23d

🎥 What makes the Latin American PID Patients Meeting so special?

Let’s hear it from the people who joined us on the last edition – participants and advocates who are shaping the future of PID care in the region. 💙

👉 This year we meet again in Buenos Aires!

#IPOPI #PID #LASID2025 #BuenosAires

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Johan Prevot @johanprevot.bsky.social · 23d

Just returned from an inspiring meeting in Cairo!

Grateful for the thoughtful contributions of Dr. @NesrinEradwan, Dr. Sohilla Lofty, Prof. Aisha El-Marsafy, Dr. Nermine Gamal & all + 🙏 to our NMO rep Ms. Shaimaa El Araby.

Thank you all for your insights & to #Grifols for the support!

IPOPI @ipopi.bsky.social · 23d

Bridging Gaps in PID Diagnosis and Access to Care in Egypt 🇪🇬
IPOPI’s delegation — Johan Prevot, Bruce Lim, Dr Nizar Mahlaoui & Dr Silvia Sanchez-Ramon — joined a scientific symposium in Cairo on 6 Oct 2025, organised with Grifols Egypt for Plasma Derivatives.

#RareDiseases #GlobalHealth #Egypt

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Johan Prevot @johanprevot.bsky.social · Sep 29

A big step forward in strengthening patient advocacy in Eastern Europe!

Proud to see such a dedicated group of united patient leaders and doctors. The power of the #PID community in action!!

Grateful to @martinepergent @LeireSolis @OtiliaStanga @Miriam_A_F who made it happen!

IPOPI @ipopi.bsky.social · Sep 29

🧬 IPOPI brought together over 20 participants from across the Eastern European region — patient organisation leaders and doctors — united by a common goal: improving care for people living with primary immunodeficiencies (PIDs).

#IPOPI #PIDAdvocacy #EasternEurope #StrongerTogether

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IPOPI @ipopi.bsky.social · Sep 29

🌍 Dr Nizar MAHLAOUI, Chair of the IPOPI Medical Advisory Panel, took part in the 5th European Symposium on Transition. The symposium gathered experts and stakeholders to exchange knowledge and best practices on how to ensure a smooth transition of care for young patients into adulthood.

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Johan Prevot @johanprevot.bsky.social · Sep 20

Thanks @casanova_lab for sharing. A great article by van der burg et al

👉 #ataxiatelangiectasia can be a secondary finding in TREC-based NBS-SCID but raises an ethical dilemma worth further exploring!

#newbornscreening @Screen4Rare #IPIC2025 @ipopi_info

Casanova Lab @casanovalab.bsky.social · Sep 18

Clinical challenges following early detection of ataxia telangiectasia through SCID newborn screening url: rupress.org/jhi/article/...

Clinical challenges following early detection of ataxia telangiectasia through SCID newborn screening | Journal of Human Immunity | Rockefeller University Press

Ataxia telangiectasia is a genetic disorder involving neurodegeneration, immunodeficiency, and cancer risk. It can be identified as incidental finding in n

rupress.org

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IPOPI @ipopi.bsky.social · Jul 18

🌐 We’re live! The new GATA2 website has launched!

We’re thrilled to announce the official release of the new GATA2 website, a dedicated online hub for anyone affected by, working with, or researching GATA2 Deficiency.

🔗 Visit us now: gata2project.eu

#GATA2Deficiency #RareDisease #PatientAdvocacy

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IPOPI @ipopi.bsky.social · Jul 30

Have you checked out the Proceedings from IPOPI’s 2024 Global Stakeholders Summit?

Don’t miss out on this must-read! Our summer newsletter is packed with the season’s most impactful insights 🌍💡

👉 e-news.ipopi.org

#IPOPI #SummerNewsletter #PrimaryImmunodeficiency

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IPOPI @ipopi.bsky.social · Jul 30

📣 SAVE THE DATE!

#IPOPI is organising an important Roundtable focused on the intersection of viral threats, immune challenges, and respiratory care — from the perspective of patients with primary immunodeficiencies (PIDs).

More updates soon!

#PublicHealth #RareDiseases #PID

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IPOPI @ipopi.bsky.social · Jul 3

🆕 IPOPI is pleased to announce the renewal of its mandate as a member of the Patients’ and Consumers’ Working Party (PCWP) at the @ema.europa.eu.

▶️ Know more here: ipopi.org/ipopi-renews...

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IPOPI @ipopi.bsky.social · Jul 8

IPOPI is proud to share the results of our global survey on the long-term effects of COVID-19 in people living with primary immunodeficiencies (PIDs)!

📖 Discover the full publication 👉 lnkd.in/d6yx2uvA

#IPOPI #PrimaryImmunodeficiency #LongCovid

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IPOPI @ipopi.bsky.social · Jun 27

📣 Early Bird Deadline Extended!

You now have until July 31 to register for IPIC2025 at the special early bird rate.

Take this extra time to secure your spot and get ready for an inspiring programme led by top experts in the field.

🔗 ipic2025.com/register-now/

#IPIC2025 #PrimaryImmunodeficiency

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IPOPI @ipopi.bsky.social · Jun 30

🌍 Great start to the Global Stakeholders Summit!
Experts & advocates shared insights on the evolving field of #PIDs and associated conditions.

More dialogue & ideas tomorrow! 💬

#GlobalStakeholdersSummit #PIDs

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IPOPI @ipopi.bsky.social · Jun 27

🌍 INSD Celebrations at CHU Liège – 26 June 2025 🎉

IPOPI’s Executive Director, @johanprevot.bsky.social, visited CHU Liège ahead of INSD, congratulating the team for their dedication to newborn screening awareness and for the warm welcome.

#INSD2025 #NewbornScreening #EarlyDiagnosis #Neonatology

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IPOPI @ipopi.bsky.social · Jun 8

📢 IPOPI's latest Hard Talks episode is now live on YouTube!

👉 Watch now: youtu.be/KTi1BXGerZ8

#IPOPI #HardTalks #ADASCID

IPOPI Hard Talks: Explore ADA-SCID Management – from Diagnosis to Treatment

YouTube video by IPOPI

youtu.be

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IPOPI @ipopi.bsky.social · Jun 17

📅 IPOPI will be attending the 5th European Congress on Pediatric/Adult Transition in Chronic & Rare Diseases!

The congress will explore current challenges in transition care for young people living with chronic and rare conditions.

Info: transition-symposium2025.inviteo.fr/en/home/14

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IPOPI @ipopi.bsky.social · Jun 18

🌍 We’re looking forward to welcoming invited participants to our IPOPI Regional African PID Patients Meeting in Kenya!

Stay tuned for updates from the event!

Visit to know more: ipopi.org/africa2025/

#IPOPIAfrica2025 #IPOPI #ASID

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