INGID

International Nursing Group for Immunodeficiencies (INGID) #INGID | Facebook: | LinkedIn: |

[IPOPI @ipopi_info]

👋 That’s a wrap on #IPIC2025!

Patricia and the IPOPI team just wanted to say a big thank you and goodbye to everyone who joined us in Prague! 💙

See you next time at #IPIC2027! ✨

#IPIC2025 #Immunology #RareDiseases #PrimaryImmunodeficiencies #TeamIPOPI

[INGID @INGID_Tweets]

🌟 INGID Shines at IPIC 2025: A Global Gathering for Clinical Excellence!

​INGID is thrilled to reflect on a truly memorable experience at IPIC 2025!
A massive thank you to every INGID members who contributed their expertise and passion, making IPIC 2025 a grand success.

[INGID @INGID_Tweets]

Genomics & Clinical Boundaries: An Expert Ethics Deep Dive at IPIC 2025

Joining the essential discussion! 🧠 Genomics & Clinical Boundaries: Truly enriching clinically rich, multidisciplinary case discussion chaired by INGID President Rosalind Fisher and an amazing panel.

[INGID @INGID_Tweets]

Deep dive into weekly IVIG, HAE treatment, and service models (Symes, Camernik, Murphy). Key Codesign Workshop led by Julia & Karlein to shape global nursing education in immunology. #IPIC2025 #INGID #ImmunologyNursing

[INGID @INGID_Tweets]

Join the INGID Educational Session at IPIC 2025!
​Available both online and offline.
​Expand your knowledge in Immunodeficiencies.
Teams Link for the INGID Informal session
– IPIC 2025 Thursday 6th November from 14.15 – 15.45 CET:
https://t.co/OCz1QszuX5$

[INGID @INGID_Tweets]

Holistic Care in the Spotlight: Emily Carne Represents INGID at IPIC 2025
Emily Carne bringing the Nursing Perspective to the forefront.
Engaging discussion on the Holistic Treatment of SID Patients during the PID diagnosis & clinical care expert panel.
INGID making its mark!

[INGID @INGID_Tweets]

INGID Ignites IPIC 2025! 🔥
Guided Poster Walk Sparks Nursing Research Dialogue

​INGID's journey at #IPIC2025 is off to an incredible start! 🚀

 We kicked off with an enthusiastic Guided Poster Walk led by Patricia Luck. 

A huge thank you to all INGID members.

[INGID @INGID_Tweets]

Breaking News
INGID Board has launched a new Educational Grant for INGID members!
Secure funding for conference attendance and buddy learning.

​Details and application process coming soon. Stay tuned on INGID webpage and social media!

​#INGID #EducationalGrant

[IPOPI @ipopi_info]

At IPIC2025, we are honoured to have Dr Martin Zach as our opening session keynote speaker. Join us as he delves into "Boundaries of immunity and where to find them". Mark your calendar for this enlightening start to the congress! 📅

🔗 https://t.co/VJFTKFE1yT

#IPIC2025 #ScientificProgramme #KeynoteSpeaker

[IPOPI @ipopi_info]

🎧 Have you listened yet?

In this episode, Sunita Dhir shares her powerful story of living with autoimmune pulmonary alveolar proteinosis (aPAP) and her experience taking part in a clinical trial.

She’s joined by Dr Maria Kokosi, who offers expert insights into aPAP care and explains how procedures like whole lung lavage can make a difference when performed in specialised centres.

If you missed it when it first came out, now’s the perfect time to catch up!

🎙️ Listen and follow our podcast: https://t.co/QexMzSldeB

#RareDiseases #aPAP #ClinicalTrials #PatientStories #Podcast #Healthcare #RareLungDisease

[IPOPI @ipopi_info]

💙 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.

Highlights:
💉 Securing safe immunoglobulin suppliesand how PDMPs become available, with a hands-on workshop on national contexts.
🧑‍⚕️ Lifelong care in PIDs — from pediatrics to elderly care, including mental health impacts.
⚡ Lightning Talks sharing what works in each country — inspiring peer-to-peer learning.
🎭 Advocacy in Action workshop with role play.
💡 Fundraising skills for patient organisations.

A full day of learning, collaboration, and new ideas to strengthen PID care.

Thanks to @CSL and @GivePlasma for the support.

#IPOPI #PID #LASID2025 #BuenosAires #PrimaryImmunodeficiency #PIDAdvocacy

[INGID @INGID_Tweets]

We are thrilled to share the success of the LASID 2025 conference, where Rosalind Fisher and Patricia Luck represented INGID.
Thanks to speakers APN Marian Ángeles Escobar Palazón (Madrid) and Dr. Alberto Alfaro who ensured a truly global and accessible educational experience

[IPOPI @ipopi_info]

🌍 @OtiliaStanga, Board Member of IPOPI, represented the organisation at the Patients and Consumers Working Party (#PCWP) plenary meeting at the @EMA_News.

@ipopi_info continues to ensure that the voices of patients with primary immunodeficiencies (PIDs) are heard in shaping decisions and discussions on therapy safety and efficacy in the European Union.

#PatientAdvocacy #PrimaryImmunodeficiencies #EMA #HealthcarePolicy

[Screen4Rare @Screen4Rare]

📢 Screen4Rare is hosting a meeting at the European Parliament on “Newborn Screening for Rare Diseases: How can the EU lead on the global stage?”

The event is hosted by MEPs @TomislavSokol, Sirpa Pietikäinen, and @BillyKelleherEU, with the support of the MEP Alliance for Rare Disease Newborn Screening.

This meeting will bring together @Screen4Rare, @ERNs, and international experts for an insightful exchange on how the EU can strengthen its role as a global leader in newborn screening for rare diseases.

[IPOPI @ipopi_info]

✨#IPIC2025 Congress Dinner!

Join us for an unforgettable evening at the magnificent Francouzská Municipal House in Prague 🇨🇿 — one of the city’s most beautiful Art Nouveau landmarks.

⚠️ Seats are limited — secure yours early: https://t.co/FbQ1KzqyUt
🌍 Connect with peers, speakers & colleagues from around the world
🍷 Enjoy fine dining in an elegant, historic setting
💬 Network, exchange ideas & celebrate the global PID community
🎟️ Ticket price: 85 EUR + VAT

#PIDcommunity #Prague #CongressDinner

[INGID @INGID_Tweets]

The INGID Board is proud to recognize Caroline Mwaniki's exceptional presentation at the Kenya Paediatric Nurses Chapter Conference held in Mombassa.

[INGID @INGID_Tweets]

Experience the grand opening of 9th Biennial ASID/ASOK Congress 2025 at Nairobi Kenya with opening talk by Prof Kritika Patel along with kind presence of Martine Paegent (IPOPI).
Expert INGID speakers Mary Louise Daly and Julia Hews Girard on Nursing Education Day.

[INGID @INGID_Tweets]

Dear INGID Members

INGID June 2025 e- newsletter is out now.

For more updates and latest news visit 

our website https://t.co/OCAIAMUCLB

Email us [email protected]

[IPOPI @ipopi_info]

🩸 IPOPI at #HTAi2025 – Advocating for Access to Life-Saving Therapies

We’re proud to see Roberta Anido de Pena, #IPOPI Board Member, speak at the Health Technology Assessment international (@HTAiOrg) 2025 symposium on the challenges of value recognition and access to plasma-derived medicinal products (PDMPs).

As patient representatives, we continue to raise awareness about the critical need for sustainable access to these essential treatments for people with primary immunodeficiencies (#PIDs) worldwide.

🧬 Ensuring the patient voice is heard in shaping health policies and market access decisions is key to equity in care.

🎙 Speakers also include experts from HIBA, @CSL, Faus Moliner, and health economist @leelabarham.

#HTAi2025 #PlasmaTherapies #AccessMatters #PDMPs #PatientVoice

[IPOPI @ipopi_info]

🤝 Connecting Communities: PIDs & SIDs

#IPOPI was delighted to join a joint meeting with Myeloma Patients Europe (MPE) and CLL Advocates Network (CLLAN) – a meaningful exchange made possible thanks to an initiative from @TakedaOncology.

We came together to explore our different perspectives on primary (#PIDs) and secondary immunodeficiencies (#SIDs), highlighting shared challenges, overlapping needs, and opportunities for collaboration.

💬 The discussion was both fruitful and enlightening, reaffirming the importance of cross-community dialogue in advocating for improved care and access to treatments for all people living with immunodeficiencies.

Thank you to all partners for your valuable insights!

#PatientAdvocacy #Collaboration #AccessToCare #Takeda #CLLAN #MPE #RareDiseases