🌍✈️ Pack your bags, NMO delegates! The XIX IPOPI Global Patients' Meeting is calling!
This event means more opportunities to meet fellow delegates, exchange ideas, and build lasting friendships! 🤝💬
gpm.ipopi.org
🎬 In our latest IPOPI mini-doc, we feature insights from Siobhan Burns, Professor of Translational Immunology at University College London, who helps explain the science behind PIDs and why understanding the genetics of these conditions matters for patients.
Watch it here: youtu.be/_0mRituivcc?...
🇸🇬 IPOPI recently met with a Singaporean patient exploring the possibility of establishing a national patient organisation, with the support of their physicians and nurses.
#PatientAdvocacy #RareDiseases #PIDCommunity
IPOPI was pleased to take part in the PID Symposium organised by the VIVA Foundation for Children with Cancer in Singapore.
Strengthening collaboration across disciplines remains essential to improve outcomes for people living with primary immunodeficiencies.
#PID #HSCT #RareDiseases #GlobalHealth
🎥From discovering new gene defects to improving treatments for patients with Primary Immunodeficiencies, Dr Adli Ali works at the intersection of research, clinical care, and patient advocacy.
▶️ Watch the mini-doc to hear his insights on advancing care for patients: www.youtube.com/watch?v=_0mR...
Day 2 of IPOPI’s 6th Regional Asian PID Patients and Doctors’ Meeting in Bangkok.
Today focused on supporting the journey to adult care — from mental health in PIDs to the challenges adult patients face.
Two days of collaboration and shared commitment to improving PID care across Asia. 💙
The first day of IPOPI’s 6th Regional Asian PID Patients and Doctors’ Meeting in Bangkok 🇹🇭 has come to a close!
A big thank you to all participants, speakers, and partners for a day of inspiring discussions and collaboration.
We can’t wait to continue tomorrow! ✨
DAY 2 – The future of medicine took center stage at King Chulalongkorn Memorial Hospital for the IPOPI | SEAPID | Chulalongkorn | Erasmus MC Meeting in Bangkok.
Bolder therapies. Deeper collaboration. Brighter futures for people living with IEI.
#IPOPI #IEI #CART #Immunology #PatientVoice
Today, on World Rare Disease Day, we stand with the millions of people worldwide living with a rare disease.
At IPOPI, we advocate for early and accurate diagnosis, equitable access to treatment and care, and stronger recognition of primary immunodeficiencies.
#WorldRareDiseaseDay #RareDiseaseDay
DAY 1 - Leaders in immunology gathered at King Chulalongkorn Memorial Hospital for the IPOPI | SEAPID | Chulalongkorn | Erasmus MC Meeting in Bangkok.
#IEI #PatientVoice #Immunology
🎬 We’re proud to share our latest mini documentary featuring Dr Nizar Mahlaoui — a leading voice in the field of primary immunodeficiencies.
Watch now: youtube.com/watch?v=_0mR...
#PrimaryImmunodeficiencies #RareDiseases #IPOPI
We are looking forward to IPOPI's upcoming regional Asian PID Patients and Doctors Meeting in Bangkok, Thailand, organised in collaboration with SEAPID.
👉 Learn more about the event at: ipopi.org/asia2026/
#IPOPI #PID #AsianMeeting
🎬 In our latest IPOPI mini-documentary, Fanta Suna shares her journey living with primary immunodeficiency — speaking about family, resilience, communication, and the importance of awareness.
Watch here: youtu.be/_0mRituivcc?...
🎬 Mini-Doc: "The Life Journey with Primary Immunodeficiencies"
Through Yara’s story, discover the strength of family, the realities of living with a rare condition, and the importance of awareness and timely care.
Watch, share, and help us amplify voices like Yara’s: youtube.com/watch?v=_0mR...
🎬 The Life Journey with Primary Immunodeficiencies
Our new mini documentary shares the powerful journeys of people living with PIDs, highlighting delayed diagnosis, treatment access challenges, and the reality of living with a chronic condition.
Watch it: youtu.be/_0mRituivcc
🌟 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
✨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
📍 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
![[TEASER] 🎞️ «The life journey with Primary Immunodeficiencies»](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:wduduyiq5tncyqu6f3xw5dcd/bafkreia7exwwz3dezarh2tebbzgsbaxwvhsvkim3f7musjwdg2iqphstem)
🌍 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
📢 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.
📄 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.
📄 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.
🎬 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
🧬 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...
🎥 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
📝 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
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
✨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
🎉 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
✨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.
