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
🌟 Our leaflets are now available in Brazilian Portuguese, Polish, Serbian, Hungarian, and many more.
All thanks to the close collaboration with our national member organisations, who help us bring these resources to patients and families worldwide. 🤝
📄 Explore them on our website: www.ipopi.org
All thanks to the close collaboration with our national member organisations, who help us bring these resources to patients and families worldwide. 🤝
📄 Explore them on our website: www.ipopi.org
February 12, 2026 at 1:38 PM
🌟 Our leaflets are now available in Brazilian Portuguese, Polish, Serbian, Hungarian, and many more.
All thanks to the close collaboration with our national member organisations, who help us bring these resources to patients and families worldwide. 🤝
📄 Explore them on our website: www.ipopi.org
All thanks to the close collaboration with our national member organisations, who help us bring these resources to patients and families worldwide. 🤝
📄 Explore them on our website: www.ipopi.org
✨Our NMO Webchat community came together for an inspiring and forward-looking discussion on the future of World PI Week, with 34 participants from 25 countries joining the exchange.
🙏 Thank you to all NMOs who joined!
#IPOPI #NMOWebchat #PIDAwareness #NMOs #StrongerTogether
🙏 Thank you to all NMOs who joined!
#IPOPI #NMOWebchat #PIDAwareness #NMOs #StrongerTogether
February 3, 2026 at 4:54 PM
✨Our NMO Webchat community came together for an inspiring and forward-looking discussion on the future of World PI Week, with 34 participants from 25 countries joining the exchange.
🙏 Thank you to all NMOs who joined!
#IPOPI #NMOWebchat #PIDAwareness #NMOs #StrongerTogether
🙏 Thank you to all NMOs who joined!
#IPOPI #NMOWebchat #PIDAwareness #NMOs #StrongerTogether
📍 IPOPI is taking part in the PCWP–HCPWP Joint Meeting at the European Medicines Agency in Amsterdam, represented by Otilia Stanga.
Ensuring the patient voice is reflected in EU regulatory and policy discussions remains a priority for #IPOPI.
#PatientVoice
Ensuring the patient voice is reflected in EU regulatory and policy discussions remains a priority for #IPOPI.
#PatientVoice
February 3, 2026 at 4:01 PM
📍 IPOPI is taking part in the PCWP–HCPWP Joint Meeting at the European Medicines Agency in Amsterdam, represented by Otilia Stanga.
Ensuring the patient voice is reflected in EU regulatory and policy discussions remains a priority for #IPOPI.
#PatientVoice
Ensuring the patient voice is reflected in EU regulatory and policy discussions remains a priority for #IPOPI.
#PatientVoice
🌍 NEW MINI-DOC: The Life Journey with Primary Immunodeficiencies
Discover the life journey of patients living with primary immunodeficiencies — from birth through adulthood to geriatric care.
🎬 Watch the trailer now: youtu.be/Z7ZDD15N_JY
Discover the life journey of patients living with primary immunodeficiencies — from birth through adulthood to geriatric care.
🎬 Watch the trailer now: youtu.be/Z7ZDD15N_JY
[TEASER] 🎞️ «The life journey with Primary Immunodeficiencies»
YouTube video by IPOPI
youtu.be
February 2, 2026 at 12:05 PM
🌍 NEW MINI-DOC: The Life Journey with Primary Immunodeficiencies
Discover the life journey of patients living with primary immunodeficiencies — from birth through adulthood to geriatric care.
🎬 Watch the trailer now: youtu.be/Z7ZDD15N_JY
Discover the life journey of patients living with primary immunodeficiencies — from birth through adulthood to geriatric care.
🎬 Watch the trailer now: youtu.be/Z7ZDD15N_JY
📢 The EU SoHO Regulation is halfway through its implementation period.
Member States have 18 months to turn words into action:
• involve patients meaningfully
• increase plasma collection
• secure a sustainable supply of plasma for essential PDMPs
Safe access to life-saving therapies cannot wait.
Member States have 18 months to turn words into action:
• involve patients meaningfully
• increase plasma collection
• secure a sustainable supply of plasma for essential PDMPs
Safe access to life-saving therapies cannot wait.
February 2, 2026 at 9:43 AM
📢 The EU SoHO Regulation is halfway through its implementation period.
Member States have 18 months to turn words into action:
• involve patients meaningfully
• increase plasma collection
• secure a sustainable supply of plasma for essential PDMPs
Safe access to life-saving therapies cannot wait.
Member States have 18 months to turn words into action:
• involve patients meaningfully
• increase plasma collection
• secure a sustainable supply of plasma for essential PDMPs
Safe access to life-saving therapies cannot wait.
Reposted by IPOPI
📄 IPOPI’s leaflets support patients, families, and healthcare professionals with easy-to-understand, patient-focused information — from diagnosis to treatment and daily life.
🎥 Explore our resources, available at: ipopi.org/publications...
Together, we empower the PID community through knowledge.
🎥 Explore our resources, available at: ipopi.org/publications...
Together, we empower the PID community through knowledge.
January 27, 2026 at 10:54 AM
📄 IPOPI’s leaflets support patients, families, and healthcare professionals with easy-to-understand, patient-focused information — from diagnosis to treatment and daily life.
🎥 Explore our resources, available at: ipopi.org/publications...
Together, we empower the PID community through knowledge.
🎥 Explore our resources, available at: ipopi.org/publications...
Together, we empower the PID community through knowledge.
📄 IPOPI’s leaflets support patients, families, and healthcare professionals with easy-to-understand, patient-focused information — from diagnosis to treatment and daily life.
🎥 Explore our resources, available at: ipopi.org/publications...
Together, we empower the PID community through knowledge.
🎥 Explore our resources, available at: ipopi.org/publications...
Together, we empower the PID community through knowledge.
January 27, 2026 at 10:54 AM
📄 IPOPI’s leaflets support patients, families, and healthcare professionals with easy-to-understand, patient-focused information — from diagnosis to treatment and daily life.
🎥 Explore our resources, available at: ipopi.org/publications...
Together, we empower the PID community through knowledge.
🎥 Explore our resources, available at: ipopi.org/publications...
Together, we empower the PID community through knowledge.
🎬 In our latest mini-documentary, patients Eduardo and Sara share their personal experiences of living with PAP.
👉 Watch the mini-documentary and hear their voices: www.youtube.com/watch?v=mSPX...
#RareDiseaseAwareness #PatientAdvocacy #MiniDocumentary #HealthCommunication
👉 Watch the mini-documentary and hear their voices: www.youtube.com/watch?v=mSPX...
#RareDiseaseAwareness #PatientAdvocacy #MiniDocumentary #HealthCommunication
January 21, 2026 at 4:35 PM
🎬 In our latest mini-documentary, patients Eduardo and Sara share their personal experiences of living with PAP.
👉 Watch the mini-documentary and hear their voices: www.youtube.com/watch?v=mSPX...
#RareDiseaseAwareness #PatientAdvocacy #MiniDocumentary #HealthCommunication
👉 Watch the mini-documentary and hear their voices: www.youtube.com/watch?v=mSPX...
#RareDiseaseAwareness #PatientAdvocacy #MiniDocumentary #HealthCommunication
🧬 For individuals affected by MUNC13-4 deficiency, new treatment options are urgently needed. A new Phase I/II clinical trial is now open, exploring an innovative gene therapy approach designed to correct the underlying cause of the disease.
👉 Learn more:
euclinicaltrials.eu/search-for-c...
👉 Learn more:
euclinicaltrials.eu/search-for-c...
January 16, 2026 at 12:00 PM
🧬 For individuals affected by MUNC13-4 deficiency, new treatment options are urgently needed. A new Phase I/II clinical trial is now open, exploring an innovative gene therapy approach designed to correct the underlying cause of the disease.
👉 Learn more:
euclinicaltrials.eu/search-for-c...
👉 Learn more:
euclinicaltrials.eu/search-for-c...
🎥 Our new mini-documentary uncovers the science, the diagnostic delays, and the real-life impact of PAP through expert and patient perspectives.
🔗 Watch it now: www.youtube.com/watch?v=mSPX...
#RareDiseaseAwareness #PAP #aPAP #minidoc #PAPdoc
🔗 Watch it now: www.youtube.com/watch?v=mSPX...
#RareDiseaseAwareness #PAP #aPAP #minidoc #PAPdoc
MINI-DOC: «Pulmonary Alveolar Proteinosis in PIDs: A Hidden Challenge»
YouTube video by IPOPI
www.youtube.com
January 15, 2026 at 9:28 AM
🎥 Our new mini-documentary uncovers the science, the diagnostic delays, and the real-life impact of PAP through expert and patient perspectives.
🔗 Watch it now: www.youtube.com/watch?v=mSPX...
#RareDiseaseAwareness #PAP #aPAP #minidoc #PAPdoc
🔗 Watch it now: www.youtube.com/watch?v=mSPX...
#RareDiseaseAwareness #PAP #aPAP #minidoc #PAPdoc
📝 Our latest educational leaflet is now available!
A tool to connect patients, families, and healthcare professionals and foster a stronger PID community.
Get it here: lnkd.in/dpCpvkWn
#IPOPI #SecondaryImmunodeficiency #Leaflet
A tool to connect patients, families, and healthcare professionals and foster a stronger PID community.
Get it here: lnkd.in/dpCpvkWn
#IPOPI #SecondaryImmunodeficiency #Leaflet
January 7, 2026 at 11:59 AM
📝 Our latest educational leaflet is now available!
A tool to connect patients, families, and healthcare professionals and foster a stronger PID community.
Get it here: lnkd.in/dpCpvkWn
#IPOPI #SecondaryImmunodeficiency #Leaflet
A tool to connect patients, families, and healthcare professionals and foster a stronger PID community.
Get it here: lnkd.in/dpCpvkWn
#IPOPI #SecondaryImmunodeficiency #Leaflet
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