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
Looking for something meaningful to read during this time? ☕
Check out the latest edition of our newsletter to discover how IDFA’s Coffee Clubs are helping Australians with PIDs feel connected and supported.
👉 Read more: e-news.ipopi.org
#IPOPI #WinterEnews
Check out the latest edition of our newsletter to discover how IDFA’s Coffee Clubs are helping Australians with PIDs feel connected and supported.
👉 Read more: e-news.ipopi.org
#IPOPI #WinterEnews
December 30, 2025 at 1:23 PM
Looking for something meaningful to read during this time? ☕
Check out the latest edition of our newsletter to discover how IDFA’s Coffee Clubs are helping Australians with PIDs feel connected and supported.
👉 Read more: e-news.ipopi.org
#IPOPI #WinterEnews
Check out the latest edition of our newsletter to discover how IDFA’s Coffee Clubs are helping Australians with PIDs feel connected and supported.
👉 Read more: e-news.ipopi.org
#IPOPI #WinterEnews
✨Season’s Greetings from IPOPI!
🎄Our Board members and staff send warm wishes for a festive holiday season and a healthy, inspiring New Year.
#SeasonGreetings #IPOPI #NewYear2026
🎄Our Board members and staff send warm wishes for a festive holiday season and a healthy, inspiring New Year.
#SeasonGreetings #IPOPI #NewYear2026
December 23, 2025 at 10:00 AM
✨Season’s Greetings from IPOPI!
🎄Our Board members and staff send warm wishes for a festive holiday season and a healthy, inspiring New Year.
#SeasonGreetings #IPOPI #NewYear2026
🎄Our Board members and staff send warm wishes for a festive holiday season and a healthy, inspiring New Year.
#SeasonGreetings #IPOPI #NewYear2026
🎉 Did you know Stichting voor Afweerstoornissen is turning 40?
Four decades of supporting patients with primary immunodeficiencies, connecting families, and creating moments of care and community.
👉 Discover more in our newsletter: e-news.ipopi.org
#SAS40Years #IPOPI #WinterEnews
Four decades of supporting patients with primary immunodeficiencies, connecting families, and creating moments of care and community.
👉 Discover more in our newsletter: e-news.ipopi.org
#SAS40Years #IPOPI #WinterEnews
December 18, 2025 at 11:49 AM
🎉 Did you know Stichting voor Afweerstoornissen is turning 40?
Four decades of supporting patients with primary immunodeficiencies, connecting families, and creating moments of care and community.
👉 Discover more in our newsletter: e-news.ipopi.org
#SAS40Years #IPOPI #WinterEnews
Four decades of supporting patients with primary immunodeficiencies, connecting families, and creating moments of care and community.
👉 Discover more in our newsletter: e-news.ipopi.org
#SAS40Years #IPOPI #WinterEnews
✨Our NMO Webchat community came together for an inspiring discussion on the future of World PI Week, with 44 participants from 30 countries joining the exchange.
🙏 Thank you to all NMOs who joined, shared perspectives, and helped shape the future. Let’s keep the momentum going - together.
🙏 Thank you to all NMOs who joined, shared perspectives, and helped shape the future. Let’s keep the momentum going - together.
December 16, 2025 at 4:37 PM
✨Our NMO Webchat community came together for an inspiring discussion on the future of World PI Week, with 44 participants from 30 countries joining the exchange.
🙏 Thank you to all NMOs who joined, shared perspectives, and helped shape the future. Let’s keep the momentum going - together.
🙏 Thank you to all NMOs who joined, shared perspectives, and helped shape the future. Let’s keep the momentum going - together.
❄️ Winter Newsletter is here!
From the excitement of IPIC2025 to fresh podcast episodes and a soon-to-launch mini-doc, check out what is happening across our global community.
👉 Catch all the updates here: e-news.ipopi.org
#IPOPI #SeasonalNewsletter
From the excitement of IPIC2025 to fresh podcast episodes and a soon-to-launch mini-doc, check out what is happening across our global community.
👉 Catch all the updates here: e-news.ipopi.org
#IPOPI #SeasonalNewsletter
December 16, 2025 at 10:25 AM
❄️ Winter Newsletter is here!
From the excitement of IPIC2025 to fresh podcast episodes and a soon-to-launch mini-doc, check out what is happening across our global community.
👉 Catch all the updates here: e-news.ipopi.org
#IPOPI #SeasonalNewsletter
From the excitement of IPIC2025 to fresh podcast episodes and a soon-to-launch mini-doc, check out what is happening across our global community.
👉 Catch all the updates here: e-news.ipopi.org
#IPOPI #SeasonalNewsletter
🌎 On #UHCDay, IPOPI stands with the global call for health for all.
The rarity of a condition should never determine someone’s access to the care they need. Everyone deserves quality, affordable healthcare, regardless of where they live or the condition they have.
👉 Check out more: bit.ly/4q3fwul
The rarity of a condition should never determine someone’s access to the care they need. Everyone deserves quality, affordable healthcare, regardless of where they live or the condition they have.
👉 Check out more: bit.ly/4q3fwul
December 12, 2025 at 3:27 PM
🌎 On #UHCDay, IPOPI stands with the global call for health for all.
The rarity of a condition should never determine someone’s access to the care they need. Everyone deserves quality, affordable healthcare, regardless of where they live or the condition they have.
👉 Check out more: bit.ly/4q3fwul
The rarity of a condition should never determine someone’s access to the care they need. Everyone deserves quality, affordable healthcare, regardless of where they live or the condition they have.
👉 Check out more: bit.ly/4q3fwul
✨IPOPI proudly signed the EU Declaration on Rare Diseases, joining partners and policymakers in a united call to improve the lives of millions of people living with rare conditions.
This is a decisive step towards a stronger, coordinated European approach.
This is a decisive step towards a stronger, coordinated European approach.
December 11, 2025 at 3:08 PM
✨IPOPI proudly signed the EU Declaration on Rare Diseases, joining partners and policymakers in a united call to improve the lives of millions of people living with rare conditions.
This is a decisive step towards a stronger, coordinated European approach.
This is a decisive step towards a stronger, coordinated European approach.
Johan Prevot, IPOPI's Executive Director, joined the HLM during the Policy Discussion session where was discussed one of the most urgent topics about rare disease care: How can Europe build early access models that ensure equitable access to innovative orphan therapies and diagnostics?
#HLMRARE2025
#HLMRARE2025
December 11, 2025 at 2:35 PM
Johan Prevot, IPOPI's Executive Director, joined the HLM during the Policy Discussion session where was discussed one of the most urgent topics about rare disease care: How can Europe build early access models that ensure equitable access to innovative orphan therapies and diagnostics?
#HLMRARE2025
#HLMRARE2025
🌟 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...