On European Patients’ Rights Day, we stand up for:
🧡 Timely diagnosis
🧡 Equal access to treatment
🧡 Quality care for everyone living with a PID
At IPOPI, we will keep working to make sure the voice of the PID community is heard and that no one is left behind.
#EuropeanPatientsRightsDay #IPOPI
One week to go!
From April 22–29, we come together for World PI Week.
Because access to full care — from early diagnosis to timely treatment and support — cannot wait.
Join us!
Together, we will make this happen.
#WorldPIWeek #AccessToCare #WorldPIWeek2026 #PatientAdvocacy #WeCantWait
This edition of the #PIDForum will focus on the challenges and opportunities linked to ageing with a primary immunodeficiency in #Europe, helping bring greater attention to the needs and experiences of the #PID community.
#PrimaryImmunodeficiencies #AgeingEurope #EuropeanParliament
During the scientific-practical conference at #Kyiv City Children’s Clinical Hospital No. 1, we had the honour of receiving an invitation from Tetyana Mostepan’s team to visit the Kyiv City Health Department and discuss how care for patients with #primaryimmunodeficiencies can be strengthened.
Today, on World Health Day, we join @who.int in marking 2026 under the theme “Together for health. Stand with science.”
At IPOPI, we remain committed to amplifying the voices of people living with primary immunodeficiencies and advocating for a healthier future for all.
🇺🇦 IPOPI was pleased to take part in an important meeting at the Ministry of health of Ukraine with Deputy Minister of Health Ievgenii Gonchar and his team, together with representatives of the patient community and clinical experts.
🇺🇦 A productive meeting took place at the State Expert Center of the Ministry of Health of Ukraine, where key issues affecting people living with PIDs were discussed.
Thank you to Edem Adamanov, Director of the State Expert Center of the Ministry of Health of Ukraine (SECMOH, Ukraine), and his team.
IPOPI took part in the conference “Primary Immunodeficiencies: Clinical Signals for Doctors of Any Specialty” in Kyiv, #Ukraine.
We were proud to contribute to this important exchange bringing together clinicians, patients and health stakeholders in support of the PID community. 🇺🇦
IPOPI's President, Martine Pergent, visited a children’s hospital and the reference centre for primary immunodeficiencies in Ukraine.
We are grateful for the opportunity to witness their work, resilience, and commitment firsthand.
#PID #PrimaryImmunodeficiencies
📢 New report released!
The IPOPI Central-Eastern European workshop brought together experts and patient representatives from 9 countries to strengthen awareness and advocacy for people living with PIDs.
🔗 Read the report here: ipopi.org/our-work/nmo...
#PID #RareDiseases #PatientAdvocacy #IPOPI
💡In this quarter’s newsletter, discover ELPIB's Plasma Project, bringing attention to a key challenge in treatment access.
👉 Read more about this important initiative: e-news.ipopi.org
#IPOPI #QuarterlyNewsletter #PatientAdvocacy #Brazil
Ezequiel has a message for you 👇
🎬 Watch the full mini documentary and be part of the conversation: youtu.be/_0mRituivcc?...
#PrimaryImmunodeficiencies #RareDiseases #PatientVoices #Awareness
We are pleased to highlight the “Journée poumon & déficit immunitaire” 🫁
This event brings together leading experts to explore the intersection between PID and pulmonary health.
🎥 Part of our PAP mini-documentary was filmed at this centre: youtu.be/mSPXlmVlRyw?...
Your quarterly update is here! 🌍
Stay informed with patient stories, community highlights, research advances, and advocacy news shaping the future of care for people living with PIDs.
📬 Read the full newsletter: e-news.ipopi.org
#IPOPI #QuarterlyNewsletter
On 12–13 March, IPOPI took part in the ERN RITA General Assembly in Utrecht, contributing to discussions on improving care for people living with rare immunological diseases.
#RareDiseases #PatientVoice
🌍✈️ 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
