martinepergent.bsky.social
@martinepergent.bsky.social
Welcome to our new friends, thank you for their commitment which, thanks to their collaboration with doctors, nurses, other national stakeholders and the support of IPOPI, will allow them to change the game in their country.
💙 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
November 19, 2025 at 3:15 PM
IPOPI was delighted to visit the hospital. We were able to witness the dedication of healthcare professionals.

Congratulations on your hard work in serving patients and your willingness to address the challenges related to access to diagnosis and treatment. We stand by you!
🌐 IPOPI representatives had the privilege of visiting Kenyatta National Hospital.

This exchange provided a valuable opportunity to strengthen collaborations, better understand local realities, and explore ways to improve care for people with primary immunodeficiencies (#PIDs) in the country.
June 26, 2025 at 8:30 AM
When a consensus emerges, we can only be pleased: patients must be considered full partners in research projects. This PID Forum is an important first step towards making this conviction a reality.

Thank you to MEP @Romana Jerković and MEP Nicolás González Casares for co-hosting the IPOPI PIDForum
Thank you to everyone who contributed to today’s #PIDForum: “Shaping the future of research: patients as equal partners.”

💡Fostering meaningful participation and recognition of patient organisations in EU research projects is key to ensuring that research and innovation are fit for purpose.
May 14, 2025 at 9:43 PM
10-year anniversary for SEAPID, a nice and highly Interesting event on Car T-cells development. Under the impulsion of Thailand, where Malaysia, The Philippines, Indonesia, Vietnam, Cambodia, Myanmar are participating. IPOPI is happy to witness the development of medical science in South-East Asia.
The 10th #SEAPID anniversary meeting took place in Bangkok!
Co-hosted by IPOPI, Erasmus MC, Chulalongkorn Hospital & THCI, it focused on #CARTcells + their impact on #PID/#IEI.

Johan Prévot reflected on 10 years of collaboration w/ SEAPID — looking back + looking forward!

#GlobalHealth #IPOPI
April 8, 2025 at 3:05 PM
IPOPI was so pleased to participate in this very fruitful stakeholders’ meeting in Novi Sad (Serbia) where patients, doctors, health decision makers shared their perspectives. A very important step to envisage further joined action to improve patients’ journey.
April 5, 2025 at 10:04 AM
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I’ll be posting this today
January 20, 2025 at 3:05 PM
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The #AIPI Meeting is ending in NYC - two days of excellent discussions! Now time for implementation to ensure we can achieve our ultimately common goal through patient centred AI - access to diagnosis and optimal care for all #PID patients! @ipopi.bsky.social
March 21, 2025 at 9:32 PM
So nice to meet in presence with our brand new board members. So proud of IPOPI’s board!
🌍 Great discussions, strategic planning, and valuable exchanges took place at the IPOPI Board Meeting today!

Looking forward to continuing our work together to improve the lives of people with primary immunodeficiencies worldwide!

#IPOPI #BoardMeeting #PatientAdvocacy #Teamwork
March 10, 2025 at 7:23 PM
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Journée de mobilisation pour la science : des événements partout en France aujourd'hui 7 mars dans le cadre du mouvement #standupforscience2025
Aux US la science est mise à mal par le DOGE et les premiers décrets de Trump, en particulier la climatologie.
Les événements sur : standupforscience.fr
March 7, 2025 at 9:02 AM
Neonatal screening for rare treatable conditions like SCID are life saving and cost effective. 2 major reasons for implementing this process widely. IPOPI will celebrate INSD with its partners from @S4R and its national members throughout the world.
March 4, 2025 at 1:44 PM
What a great meeting! And what a pleasure to meet patients and to reconnect with doctors in Cairo!
In addition to this, I had the pleasure of visiting Grifols plasma collection centers as part of a public-private project with the Egyptian government to ensure better access to immunoglobulin therapy
🌍 #IPOPI met with PID experts & Nada in #Egypt! Thanks to #Grifols, we visited their #plasma facilities & saw partnerships in action.

Thanks to Dr Nesrine Radwan and Dr Sohilla Lotfy! Looking forward to working with Nada on PID awareness.

Great connecting with World Federation of Hemophilia!
February 18, 2025 at 11:11 PM
Indeed, it's so good to meet!
Thanks to all the family members for being there and participating so actively 😅. We reached a record of participation 🥰.
Thanks Otilia Stanga and Miriam Ferreira for preparing so well and of course hats off to our expert and friend Prof Nahla Erwa for her talk. 🤩
🌍A big thank you to all the 40 participants from 28 countries worldwide who participated in IPOPI's latest NMO #Webchat!

📜 We were honored to hear from our guest, Dr Nahla Erwa from #Sudan, who provided valuable insights into "Understand PIDs - What every advocate should know".🩺

#IPOPI #PID #NMO
February 5, 2025 at 11:46 AM
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Don’t miss your chance to secure early bird rates for #IPIC2025!

Learn from the world-renowned experts as they present the latest advances in primary immunodeficiency care.

🎟️ Secure your ticket here: ipic2025.com/register-now/

#IPOPI #EarlyBirdRates #PrimaryImmunodeficiency
February 4, 2025 at 12:05 PM
Le dépistage néonatal des DICS (maladie asymptomatique à la naissance, mortelle à - de 1 an) devait être lancé en juin 2025. C’est repoussé. Parce que le budget de la sécurité sociale n’est pas voté. Ceux qui bloquent jouent aussi avec la vie de bébés qui pourraient être sauvés.
February 2, 2025 at 9:15 AM
Belle et heureuse année. Bonne santé. Plein de projets de succès. Beaucoup de doux moments en famille et entre amis. Bienvenue 2025 !
January 1, 2025 at 8:28 AM
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Pour ceux qui ne le connaissent pas encore, cet excellent outil mis en place par la chercheuse Elizabeth Kozlowski du CERCEC / EHESS : la frise chronologique de la guerre de la Russie contre l'Ukraine, accompagnée de la traduction des principaux textes et discours.

chrono.cercec.fr
November 20, 2024 at 4:12 PM
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DANS LE 7-10, MISÉRABILISME, DÉSINFORMATION ET PROPAGANDE - Une ITW véhémente et tapageuse de la ministre Catherine Vautrin à 7h50, un Mathieu Noël qui bastonne sur la France qui va mal, un journal de 08h00 au soutien de la Coordination Rurale (proche de l'extrême droite) d'Agen...
November 19, 2024 at 2:56 PM
Multidrug resistance to antimicrobials is a real global threat. Only by using antimicrobials such as antibiotics based on proven need will we save the lives of those who need them constantly or regularly because of their immune system dysfunction.
November 18, 2024 at 10:34 AM