IPOPI
@ipopi.bsky.social
IPOPI, International Patient Organisation for Primary Immunodeficiencies, is a non-profit international organisation and the leading advocate for primary immunodeficiency (PID) patients worldwide
🌟 IPOPI participated in the third panel of the High-Level Meeting, focusing on: Accelerating Equitable Access to Diagnostics and Enabling Early Treatment Onset with Innovative Orphan Drugs and Digital Innovation.
December 10, 2025 at 4:38 PM
🌟 IPOPI participated in the third panel of the High-Level Meeting, focusing on: Accelerating Equitable Access to Diagnostics and Enabling Early Treatment Onset with Innovative Orphan Drugs and Digital Innovation.
✨ We have wrapped up an insightful and engaging PID Forum on “When Rare Meets the Not-So-Rare: the Case of PIDs & SIDs.”
💡It was an enlightening PID Forum on how expertise built around PIDs can help improve the understanding, diagnosis and management of SIDs.
#PIDForum #EuropeanParliament
💡It was an enlightening PID Forum on how expertise built around PIDs can help improve the understanding, diagnosis and management of SIDs.
#PIDForum #EuropeanParliament
December 10, 2025 at 12:02 PM
✨ We have wrapped up an insightful and engaging PID Forum on “When Rare Meets the Not-So-Rare: the Case of PIDs & SIDs.”
💡It was an enlightening PID Forum on how expertise built around PIDs can help improve the understanding, diagnosis and management of SIDs.
#PIDForum #EuropeanParliament
💡It was an enlightening PID Forum on how expertise built around PIDs can help improve the understanding, diagnosis and management of SIDs.
#PIDForum #EuropeanParliament
🎙️ New Immunity Pulse!
Childhood cancer survivor Frea Van Haperen shares how years of recurrent infections were not just side effects. With Prof. Isabelle Meyts and Martine Pergent, we explore why early referral to immunology matters.
🎧 Listen now on Spotify: open.spotify.com/episode/0hPV...
Childhood cancer survivor Frea Van Haperen shares how years of recurrent infections were not just side effects. With Prof. Isabelle Meyts and Martine Pergent, we explore why early referral to immunology matters.
🎧 Listen now on Spotify: open.spotify.com/episode/0hPV...
December 9, 2025 at 2:55 PM
🎙️ New Immunity Pulse!
Childhood cancer survivor Frea Van Haperen shares how years of recurrent infections were not just side effects. With Prof. Isabelle Meyts and Martine Pergent, we explore why early referral to immunology matters.
🎧 Listen now on Spotify: open.spotify.com/episode/0hPV...
Childhood cancer survivor Frea Van Haperen shares how years of recurrent infections were not just side effects. With Prof. Isabelle Meyts and Martine Pergent, we explore why early referral to immunology matters.
🎧 Listen now on Spotify: open.spotify.com/episode/0hPV...
💡Discover how the Primary Immunodeficiency Network of South Africa (PiNSA) brought patients, carers, and clinicians together at its inaugural PID gathering — sparking discussion, solutions, and real action.
👉 Read more: www.e-news.ipopi.org/
#IPOPI #SeasonalNewsletter
👉 Read more: www.e-news.ipopi.org/
#IPOPI #SeasonalNewsletter
December 5, 2025 at 11:57 AM
💡Discover how the Primary Immunodeficiency Network of South Africa (PiNSA) brought patients, carers, and clinicians together at its inaugural PID gathering — sparking discussion, solutions, and real action.
👉 Read more: www.e-news.ipopi.org/
#IPOPI #SeasonalNewsletter
👉 Read more: www.e-news.ipopi.org/
#IPOPI #SeasonalNewsletter
✨ Get a glimpse of the highlights from the 9th African PID Patients Meeting.
We had the pleasure of welcoming 30 participants from 10 African countries: Algeria, Egypt, Ghana, Kenya, Morocco, Senegal, South Africa, Sudan, Tunisia, and Uganda.
👉 Check it out here: lnkd.in/dRiWWsQW
#IPOPI
We had the pleasure of welcoming 30 participants from 10 African countries: Algeria, Egypt, Ghana, Kenya, Morocco, Senegal, South Africa, Sudan, Tunisia, and Uganda.
👉 Check it out here: lnkd.in/dRiWWsQW
#IPOPI
December 4, 2025 at 2:34 PM
✨ Get a glimpse of the highlights from the 9th African PID Patients Meeting.
We had the pleasure of welcoming 30 participants from 10 African countries: Algeria, Egypt, Ghana, Kenya, Morocco, Senegal, South Africa, Sudan, Tunisia, and Uganda.
👉 Check it out here: lnkd.in/dRiWWsQW
#IPOPI
We had the pleasure of welcoming 30 participants from 10 African countries: Algeria, Egypt, Ghana, Kenya, Morocco, Senegal, South Africa, Sudan, Tunisia, and Uganda.
👉 Check it out here: lnkd.in/dRiWWsQW
#IPOPI
📖 What’s new in our autumn newsletter?
The 2024 PIDetect Programme is empowering healthcare professionals across Mali and improving PID diagnosis nationwide. Find out how these efforts are creating real impact and what’s next!
✨ Read more: e-news.ipopi.org
#PIDetect #PIDs #Mali
The 2024 PIDetect Programme is empowering healthcare professionals across Mali and improving PID diagnosis nationwide. Find out how these efforts are creating real impact and what’s next!
✨ Read more: e-news.ipopi.org
#PIDetect #PIDs #Mali
November 28, 2025 at 3:01 PM
📖 What’s new in our autumn newsletter?
The 2024 PIDetect Programme is empowering healthcare professionals across Mali and improving PID diagnosis nationwide. Find out how these efforts are creating real impact and what’s next!
✨ Read more: e-news.ipopi.org
#PIDetect #PIDs #Mali
The 2024 PIDetect Programme is empowering healthcare professionals across Mali and improving PID diagnosis nationwide. Find out how these efforts are creating real impact and what’s next!
✨ Read more: e-news.ipopi.org
#PIDetect #PIDs #Mali
IPOPI invites you to the upcoming PID Forum at the European Parliament!
PID Forum: When Rare Meets the Not-So-Rare – The Case of PIDs & SIDs.
Register here: forms.gle/eHJsMh7aoD1V...
We look forward to welcoming you!
PID Forum: When Rare Meets the Not-So-Rare – The Case of PIDs & SIDs.
Register here: forms.gle/eHJsMh7aoD1V...
We look forward to welcoming you!
November 27, 2025 at 12:43 PM
IPOPI invites you to the upcoming PID Forum at the European Parliament!
PID Forum: When Rare Meets the Not-So-Rare – The Case of PIDs & SIDs.
Register here: forms.gle/eHJsMh7aoD1V...
We look forward to welcoming you!
PID Forum: When Rare Meets the Not-So-Rare – The Case of PIDs & SIDs.
Register here: forms.gle/eHJsMh7aoD1V...
We look forward to welcoming you!
Reposted by IPOPI
🧬 Join @martinepergent.bsky.social in a heartfelt conversation with Joshua Williams about his long and challenging journey with secondary immunodeficiencies (SIDs). Dr. Stephen Jolles brings the medical perspective!
🎧 Listen now: open.spotify.com/episode/2IGi...
#PIDAwareness #IPOPI
🎧 Listen now: open.spotify.com/episode/2IGi...
#PIDAwareness #IPOPI
November 10, 2025 at 4:18 PM
🧬 Join @martinepergent.bsky.social in a heartfelt conversation with Joshua Williams about his long and challenging journey with secondary immunodeficiencies (SIDs). Dr. Stephen Jolles brings the medical perspective!
🎧 Listen now: open.spotify.com/episode/2IGi...
#PIDAwareness #IPOPI
🎧 Listen now: open.spotify.com/episode/2IGi...
#PIDAwareness #IPOPI
We’re happy to share this snapshot from the closing session of the Scientific Day on #Immunology and #AMR. 👏🏻
IPOPI was represented by Leire Solis, our Health Policy & Advocacy Director. 💙
🚀 We continue paving a promising path to protect people living with PIDs. 💪🏻
IPOPI was represented by Leire Solis, our Health Policy & Advocacy Director. 💙
🚀 We continue paving a promising path to protect people living with PIDs. 💪🏻
November 26, 2025 at 11:28 AM
We’re happy to share this snapshot from the closing session of the Scientific Day on #Immunology and #AMR. 👏🏻
IPOPI was represented by Leire Solis, our Health Policy & Advocacy Director. 💙
🚀 We continue paving a promising path to protect people living with PIDs. 💪🏻
IPOPI was represented by Leire Solis, our Health Policy & Advocacy Director. 💙
🚀 We continue paving a promising path to protect people living with PIDs. 💪🏻
🎥 Discover Pulmonary Alveolar Proteinosis, a rare but serious complication affecting patients with PIDs.
Our upcoming Mini-Doc sheds light on this hidden challenge, with expert insights, clear explanations, and the importance of early diagnosis.
🔔 Check it here: youtu.be/VogGge5OtIk
Our upcoming Mini-Doc sheds light on this hidden challenge, with expert insights, clear explanations, and the importance of early diagnosis.
🔔 Check it here: youtu.be/VogGge5OtIk
[TEASER] 🎞️ «Pulmonary Alveolar Proteinosis in PIDs: A Hidden Challenge» - AVAILABLE SOON
YouTube video by IPOPI
youtu.be
November 25, 2025 at 4:34 PM
🎥 Discover Pulmonary Alveolar Proteinosis, a rare but serious complication affecting patients with PIDs.
Our upcoming Mini-Doc sheds light on this hidden challenge, with expert insights, clear explanations, and the importance of early diagnosis.
🔔 Check it here: youtu.be/VogGge5OtIk
Our upcoming Mini-Doc sheds light on this hidden challenge, with expert insights, clear explanations, and the importance of early diagnosis.
🔔 Check it here: youtu.be/VogGge5OtIk
🥇 Dr Inês Serra was the winner of the Abstract Award at #IPIC2025 for her research: "Analysis of Genetic Overlap Between Inborn Errors of Immunity and Neurodevelopmental Disorders"
📺 Watch the full interview: youtu.be/DK1ZLCh_1AI
📺 Watch the full interview: youtu.be/DK1ZLCh_1AI
🥇Inês Serra - Abstract Poster Winner at IPIC2025
YouTube video by IPOPI
youtu.be
November 24, 2025 at 2:48 PM
🥇 Dr Inês Serra was the winner of the Abstract Award at #IPIC2025 for her research: "Analysis of Genetic Overlap Between Inborn Errors of Immunity and Neurodevelopmental Disorders"
📺 Watch the full interview: youtu.be/DK1ZLCh_1AI
📺 Watch the full interview: youtu.be/DK1ZLCh_1AI
Have you read our Autumn Newsletter? 🍂📰
We shared an important milestone in neonatal screening — a major step forward for early diagnosis and improved patient care.
🔗 Missed it? Catch up on the full newsletter here: e-news.ipopi.org
#IPOPI #SeasonalNewsletter
We shared an important milestone in neonatal screening — a major step forward for early diagnosis and improved patient care.
🔗 Missed it? Catch up on the full newsletter here: e-news.ipopi.org
#IPOPI #SeasonalNewsletter
November 21, 2025 at 3:14 PM
Have you read our Autumn Newsletter? 🍂📰
We shared an important milestone in neonatal screening — a major step forward for early diagnosis and improved patient care.
🔗 Missed it? Catch up on the full newsletter here: e-news.ipopi.org
#IPOPI #SeasonalNewsletter
We shared an important milestone in neonatal screening — a major step forward for early diagnosis and improved patient care.
🔗 Missed it? Catch up on the full newsletter here: e-news.ipopi.org
#IPOPI #SeasonalNewsletter
AMR is a growing threat — and especially serious for people with PIDs, who depend on effective antibiotics.
As ENIPAR members, we call for stronger national action, better training and fair access to diagnostics.
📄 Call to Action: ehma.org/app/uploads/...
#AMR #PID #WAW
As ENIPAR members, we call for stronger national action, better training and fair access to diagnostics.
📄 Call to Action: ehma.org/app/uploads/...
#AMR #PID #WAW
November 21, 2025 at 2:56 PM
AMR is a growing threat — and especially serious for people with PIDs, who depend on effective antibiotics.
As ENIPAR members, we call for stronger national action, better training and fair access to diagnostics.
📄 Call to Action: ehma.org/app/uploads/...
#AMR #PID #WAW
As ENIPAR members, we call for stronger national action, better training and fair access to diagnostics.
📄 Call to Action: ehma.org/app/uploads/...
#AMR #PID #WAW
🌍 World Children’s Day
Today we celebrate the voices, rights, and dreams of children everywhere.
A reminder that children are our future — and they deserve safety, health, education, and the chance to thrive. 💛
Together, we can build a world where every child grows, learns, and shines: healthy! ✨
Today we celebrate the voices, rights, and dreams of children everywhere.
A reminder that children are our future — and they deserve safety, health, education, and the chance to thrive. 💛
Together, we can build a world where every child grows, learns, and shines: healthy! ✨
November 20, 2025 at 1:12 PM
🌍 World Children’s Day
Today we celebrate the voices, rights, and dreams of children everywhere.
A reminder that children are our future — and they deserve safety, health, education, and the chance to thrive. 💛
Together, we can build a world where every child grows, learns, and shines: healthy! ✨
Today we celebrate the voices, rights, and dreams of children everywhere.
A reminder that children are our future — and they deserve safety, health, education, and the chance to thrive. 💛
Together, we can build a world where every child grows, learns, and shines: healthy! ✨
💙 We are thrilled to share the exciting news of welcoming two fantastic additions to the #IPOPI family: GhanaPOPI and ASOGEIDI [Guatemala]!
We are eager to collaborate with you to enhance diagnosis and care for patients with primary immunodeficiencies.
#IPOPI #Immunodeficiency
We are eager to collaborate with you to enhance diagnosis and care for patients with primary immunodeficiencies.
#IPOPI #Immunodeficiency
November 19, 2025 at 3:00 PM
💙 We are thrilled to share the exciting news of welcoming two fantastic additions to the #IPOPI family: GhanaPOPI and ASOGEIDI [Guatemala]!
We are eager to collaborate with you to enhance diagnosis and care for patients with primary immunodeficiencies.
#IPOPI #Immunodeficiency
We are eager to collaborate with you to enhance diagnosis and care for patients with primary immunodeficiencies.
#IPOPI #Immunodeficiency
🌍 On 18-19 November 2025, the European Medicines Agency held a meeting with patient, consumer and healthcare professional organisations. The meeting was to discuss different projects to optimise clinical trials, availability and supply of medicines or the international activities the EMA develops.
November 19, 2025 at 9:10 AM
🌍 On 18-19 November 2025, the European Medicines Agency held a meeting with patient, consumer and healthcare professional organisations. The meeting was to discuss different projects to optimise clinical trials, availability and supply of medicines or the international activities the EMA develops.
💬 "Patients must not be sidelined – their perspectives and experiences are vital in creating better treatments and improving lives."
Read the full article and join the conversation🔗 www.theparliamentmagazine.eu/news/article...
Read the full article and join the conversation🔗 www.theparliamentmagazine.eu/news/article...
Op-ed: Patient communities must not be excluded from rare disease research
New EU rules could push patient groups out of vital research projects over their industry links. Yet their voice is indispensable — rare disease re...
www.theparliamentmagazine.eu
November 18, 2025 at 4:04 PM
💬 "Patients must not be sidelined – their perspectives and experiences are vital in creating better treatments and improving lives."
Read the full article and join the conversation🔗 www.theparliamentmagazine.eu/news/article...
Read the full article and join the conversation🔗 www.theparliamentmagazine.eu/news/article...
This #AMRWeek, IPOPI highlights the urgent need for collaboration across healthcare providers, researchers, and policymakers to ensure that people with PIDs are not left behind in the global fight against antimicrobial resistance.
November 18, 2025 at 9:35 AM
This #AMRWeek, IPOPI highlights the urgent need for collaboration across healthcare providers, researchers, and policymakers to ensure that people with PIDs are not left behind in the global fight against antimicrobial resistance.
IPOPI welcomes the positive CHMP opinion recommending EU marketing authorisation for Waskyra™, a groundbreaking ex vivo gene therapy for Wiskott-Aldrich Syndrome.
For more information: ipopi.org/ema-waskyra-...
For more information: ipopi.org/ema-waskyra-...
IPOPI Applauds EMA’s Positive Opinion on Waskyra™ for Wiskott-Aldrich Syndrome - IPOPI
IPOPI welcomes the EMA’s positive opinion on Waskyra™, a breakthrough gene therapy bringing new hope to patients with Wiskott-Aldrich Syndrome.
ipopi.org
November 17, 2025 at 10:10 AM
IPOPI welcomes the positive CHMP opinion recommending EU marketing authorisation for Waskyra™, a groundbreaking ex vivo gene therapy for Wiskott-Aldrich Syndrome.
For more information: ipopi.org/ema-waskyra-...
For more information: ipopi.org/ema-waskyra-...
💙 The #IPIC2025 Congress Dinner brought together our global PID community for an evening filled with laughter, friendship, and celebration.
Thank you to everyone who joined us — your energy and smiles made this night truly special! 🌍
Find all the pictures here: web.facebook.com/media/set/?v...
Thank you to everyone who joined us — your energy and smiles made this night truly special! 🌍
Find all the pictures here: web.facebook.com/media/set/?v...
November 13, 2025 at 1:40 PM
💙 The #IPIC2025 Congress Dinner brought together our global PID community for an evening filled with laughter, friendship, and celebration.
Thank you to everyone who joined us — your energy and smiles made this night truly special! 🌍
Find all the pictures here: web.facebook.com/media/set/?v...
Thank you to everyone who joined us — your energy and smiles made this night truly special! 🌍
Find all the pictures here: web.facebook.com/media/set/?v...
Can the new Critical Medicines Act (CMA) truly make a difference for patients?
At IPOPI, we believe the CMA’s success must be measured by one simple criterion:
👉 the real, positive impact it delivers for patients who rely on critical medicines every day.
www.euractiv.com/opinion/the-...
At IPOPI, we believe the CMA’s success must be measured by one simple criterion:
👉 the real, positive impact it delivers for patients who rely on critical medicines every day.
www.euractiv.com/opinion/the-...
The Critical Medicines Act Must Deliver for Patients Who Depend on Plasma | Euractiv
The Critical Medicines Act (CMA) is an opportunity to address Europe’s medicine shortages, particularly for patients relying on plasma-derived therapies. It must ensure resilient plasma supply chains,...
www.euractiv.com
November 12, 2025 at 12:16 PM
Can the new Critical Medicines Act (CMA) truly make a difference for patients?
At IPOPI, we believe the CMA’s success must be measured by one simple criterion:
👉 the real, positive impact it delivers for patients who rely on critical medicines every day.
www.euractiv.com/opinion/the-...
At IPOPI, we believe the CMA’s success must be measured by one simple criterion:
👉 the real, positive impact it delivers for patients who rely on critical medicines every day.
www.euractiv.com/opinion/the-...
🧬 Join @martinepergent.bsky.social in a heartfelt conversation with Joshua Williams about his long and challenging journey with secondary immunodeficiencies (SIDs). Dr. Stephen Jolles brings the medical perspective!
🎧 Listen now: open.spotify.com/episode/2IGi...
#PIDAwareness #IPOPI
🎧 Listen now: open.spotify.com/episode/2IGi...
#PIDAwareness #IPOPI
November 10, 2025 at 4:18 PM
🧬 Join @martinepergent.bsky.social in a heartfelt conversation with Joshua Williams about his long and challenging journey with secondary immunodeficiencies (SIDs). Dr. Stephen Jolles brings the medical perspective!
🎧 Listen now: open.spotify.com/episode/2IGi...
#PIDAwareness #IPOPI
🎧 Listen now: open.spotify.com/episode/2IGi...
#PIDAwareness #IPOPI
👋 That’s a wrap on #IPIC2025!
Patricia and the IPOPI team just wanted to say a big thank you and goodbye to everyone who joined us in Prague! 💙
See you next time! ✨
#IPIC2025 #Immunology #RareDiseases #PrimaryImmunodeficiencies #TeamIPOPI
Patricia and the IPOPI team just wanted to say a big thank you and goodbye to everyone who joined us in Prague! 💙
See you next time! ✨
#IPIC2025 #Immunology #RareDiseases #PrimaryImmunodeficiencies #TeamIPOPI
November 7, 2025 at 5:05 PM
👋 That’s a wrap on #IPIC2025!
Patricia and the IPOPI team just wanted to say a big thank you and goodbye to everyone who joined us in Prague! 💙
See you next time! ✨
#IPIC2025 #Immunology #RareDiseases #PrimaryImmunodeficiencies #TeamIPOPI
Patricia and the IPOPI team just wanted to say a big thank you and goodbye to everyone who joined us in Prague! 💙
See you next time! ✨
#IPIC2025 #Immunology #RareDiseases #PrimaryImmunodeficiencies #TeamIPOPI
🌟 Final day at #IPIC2025!
What an inspiring wrap-up to three days of science, collaboration, and innovation! From gene therapy and genomics to liver health and young investigator achievements — today had it all
A huge thank you to everyone who joined us and made this congress so special!
What an inspiring wrap-up to three days of science, collaboration, and innovation! From gene therapy and genomics to liver health and young investigator achievements — today had it all
A huge thank you to everyone who joined us and made this congress so special!
November 7, 2025 at 5:04 PM
🌟 Final day at #IPIC2025!
What an inspiring wrap-up to three days of science, collaboration, and innovation! From gene therapy and genomics to liver health and young investigator achievements — today had it all
A huge thank you to everyone who joined us and made this congress so special!
What an inspiring wrap-up to three days of science, collaboration, and innovation! From gene therapy and genomics to liver health and young investigator achievements — today had it all
A huge thank you to everyone who joined us and made this congress so special!
✨ Another fantastic day at #IPIC2025!
From complex infections to cutting-edge global updates, today’s sessions brought powerful insights, inspiring discussions, and incredible learning moments from experts around the world 🌍
The spirit of collaboration and innovation was truly on display!
From complex infections to cutting-edge global updates, today’s sessions brought powerful insights, inspiring discussions, and incredible learning moments from experts around the world 🌍
The spirit of collaboration and innovation was truly on display!
November 6, 2025 at 5:02 PM
✨ Another fantastic day at #IPIC2025!
From complex infections to cutting-edge global updates, today’s sessions brought powerful insights, inspiring discussions, and incredible learning moments from experts around the world 🌍
The spirit of collaboration and innovation was truly on display!
From complex infections to cutting-edge global updates, today’s sessions brought powerful insights, inspiring discussions, and incredible learning moments from experts around the world 🌍
The spirit of collaboration and innovation was truly on display!