Latest posts tagged with #IPOPI on Bluesky
📢 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
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
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
🎬 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
✨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
📝 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
❄️ 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
💡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
✨ 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
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 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
🧬 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
🚀 The final countdown begins! ⏳ Just 1 week until IPIC2025 Congress!
Are you ready for a week filled with innovation, insights, and inspiration?
👉 ipic2025.com
#IPOPI #IPIC2025
📢 The IPOPI 2024 Annual Review Report is now live!
Explore the key moments, global events, and new initiatives that helped IPOPI grow stronger in supporting people with primary immunodeficiencies worldwide.
👉 Read the full review here: ipopi.org/2024-annual-...
#IPOPI #AnnualReview
🍂 Your autumn update is here: the IPOPI Newsletter!
Stay informed this season: IPIC2025 is approaching, celebrate the Jose Drabwell Research Grant winners, hear WPIW’s global initiatives, tune into our new podcast and more.
📬 Don’t miss out: e-news.ipopi.org
#IPOPI #AutumnNewsletter
💙 Day 2 of the Latin American PID Patients Meeting brought us closer together – patients, doctors, partners and advocates united in strengthening PID care and awareness.
Thanks to CSL and Grifols for the support.
#IPOPI #PID #LASID2025 #BuenosAires #PrimaryImmunodeficiency #PIDAdvocacy
📸 Day 1 at the Latin American PID Patients Meeting was full of energy and meaningful exchanges!
A great start full of knowledge, collaboration, and ideas to drive progress for people living with PIDs in Latin America! 💙
Made possible with the support of: CSL & Grifols
#IPOPI #PID #LASID2025
👏 We are proud to celebrate and announce that Professor Martin van Hagen, Vice-Chairman of IPOPI’s Medical Advisory Panel (MAP), has been appointed as Officer of the Order of Orange-Nassau by His Majesty the King of the Netherlands.
#IPOPI #RoyalHonor #ClinicalImmunology #HealthcarePioneer
💙 We are thrilled to share the exciting news of welcoming one fantastic addition to the #IPOPI family: Kuwait Pids Group in #Kuwait!
We are eager to collaborate with you to enhance diagnosis and care for patients with primary immunodeficiencies.
#IPOPI #Immunodeficiency #TogetherWeAreStronger
🎥 What makes the Latin American PID Patients Meeting so special?
Let’s hear it from the people who joined us on the last edition – participants and advocates who are shaping the future of PID care in the region. 💙
👉 This year we meet again in Buenos Aires!
#IPOPI #PID #LASID2025 #BuenosAires
🌍 Celebrate International Plasma Awareness Week!
Wherever you are, join us in celebrating and spreading awareness!
💉 Your plasma donation might take just a moment of your day, but it’s a lifetime of impact for someone else.
#IPAW2025 #PlasmaAwareness #PlasmaDonors #ThankYouDonors #IPOPI
🧬 IPOPI brought together over 20 participants from across the Eastern European region — patient organisation leaders and doctors — united by a common goal: improving care for people living with primary immunodeficiencies (PIDs).
#IPOPI #PIDAdvocacy #EasternEurope #StrongerTogether
🌍 Coming soon: IPOPI’s Eastern European Awareness and Advocacy Workshop!
Stay tuned for updates from Budapest! 💙
#IPOPI #PrimaryImmunodeficiency #PIDPolicy #EasternEurope #PlasmaAccess #AdvocacyInAction
