AAPIDP
@aapidp
Darse cuenta a tiempo es un buen comienzo. Involucrarte, un buen camino.
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📸 Day 1 at the Latin American PID Patients Meeting was full of energy and meaningful exchanges! Highlights included: 🧩 Strategy workshop and lectures on the future of PID and opportunities for regional progress 🔍 Insights into diagnosis, including how AI can drive…
🌍💡As we conclude the second and final day of the Global Stakeholders Summit, we thank everyone who contributed to the thoughtful and forward-looking discussions on the future of PIDs. We look forward to building on the insights shared during this summit and to continuing this…
🩸 IPOPI at HTAi 2025 – Advocating for Access to Life-Saving Therapies We’re happy to share that Roberta Anido de Pena, IPOPI Board Member, has represented the patient community at Health Technology Assessment international (HTAi) 2025, speaking on the challenges of value…
🖤 It is with profound sadness that the #IPOPI family bids farewell to one of its most beloved members, Jose Drabwell, Past-President and Board Member of IPOPI. Her passing leaves a void that cannot be filled, but Jose’s spirit, passion, and legacy will forever inspire us. 🌟…
¿Sabías que estamos acá para ayudarte? 🌟 Acompañamos y apoyamos a pacientes con Inmunodeficiencia Primaria y a sus familias, mejorando su calidad de vida. 💪 #TeEstamosBuscando y podemos ayudarte Para comunicarte con nosotros aapidp.com.ar / +54 (11) 4415-4415
🌍 IPOPI at the European Parliament for "Newborn Screening Saves Lives: How Could the EU Support Member States in the Next Institutional Mandate?" Hosted by MEP @BillyKelleherEU and in collaboration with the @Screen4Rare initiative, this event brought together EU institutions,…
What great pleasure for @ipopi_info to count on these committed people! Ready to work hard for our common cause 😃
📷 The new Board of Directors of #IPOPI was recently elected by IPOPI’s National Member Organisations, and the results were announced during the Annual General Assembly at the Global Patients’ Meeting on October 18, 2024, in Marseille. Congratulations to Cynthia Olotch, Roberta…
Congratulations to our beloved Teresa, ex @ipopi_info Medical Advisory Panel Chairperson, always there for patients and a force in the #PID field who once said it takes 2 men to replace a woman. Perhaps today is proof in the pudding 🙂? #primaryimmunodefiency #ESID2024 #GPM2024
A standing ovation for Professor Teresa Español, honored with the ESID Lifetime Achievement Award at #ESID2024! Congratulations on this well-deserved recognition of your immense contributions to the field of immunology! 👏 #ESID #Immunology
🧊 Our team is breaking the ice with the attendees! Great energy in the room as Whitney Ayoub Goulstone, Otilia Stanga, and Miriam Ferreira lead the session. #patients #GPM2024 #Marseille #patientadvocacy #IPOPI
🌍A big thank you to all the NMO delegates who participated in IPOPI's latest NMO Webchat on July 9! We were thrilled to welcome 33 participants from 20 countries worldwide. 🙌 #IPOPI #NMO #Webchat #PID #GlobalHealth
📣The Joint Clinical Assessment holds the potential to speed up access to medicines across Europe, but its current guidelines on direct and indirect comparisons threaten #PatientAccess. Join us in this Call To Action! Read more: eahad.org/call-to-action…… #EUHealth…
☀️ Welcome Summer with the IPOPI e-News! Get the latest news straight from the President’s desk 📰, learn more about the IPOPI Research Grant opportunity💡, and review the highlights of recent important events. Read more here: e-news.ipopi.org
Aún es tiempo de conectarse! Next today: vacunas, Autoinflamatorios, HLH, Terapias dirigidas @UDD_FM @Info4PI @ipopi_info
Full room at the #WHA77 side event on #Eurohealth on #socialparticipation. Plenty of food for thought on how to invoice the people in the decision making process so that politicians answer to the right needs. We should make sure that we #LeaveNoOneBehind
⏰Soon Our new #Eurohealth on #socialparticipation will be launched during this #WHA77 side-event, held on 28 May at 18:00 in Geneva: eurohealthobservatory.who.int/news-room/even… 📚🔎 eurohealthobservatory.who.int/publications/e… @UHC2030 @WHO @WHO_Europe @WHOEMRO @CSOs4UHC @pahowho @USAID @MinZdravje @sanidadgob #UHC
International Neonatal Screening Day (#INSD) is a unique opportunity to join a 🌎🌍🌏 network working for more equitable access to newborn screening for #rarediseases. If you are planning an event or a campaign, please do share it! 👇👇
Ready to take action? 🚀 Make a lasting impact on children's health by talking about International Neonatal Screening Day (#INSD) Share your plans with us bit.ly/3WccQwQ #SeeTheUnseen
📷Thank you for being part of the lively discussion at our recent NMO Webchat! With participants joining from 17 diverse countries, we were thrilled to have you enriching the dialogue. Your active participation made it truly engaging and valuable. #IPOPI #NMOWebchat…
People affected by hereditary angioedema often face a long and difficult journey to early diagnosis and appropriate care. This #HAEDay, we’re having a look at EU policies to explore how we can collaboratively work on addressing these issues. Read more: bit.ly/3UHWQCu
The IPOPI Board Members couldn't be left out of the #WorldPIWeek! They got together to strike the Y pose to raise awareness for #primaryimmunodeficiency. Join them in spreading #PICtureAwareness!💙 #IPOPI
🌍 IPOPI at #IPPC2024 in Athens! @JohanPrevot, IPOPI's Executive Director, participated in a crucial panel discussion on the need for a more consistent approach to IgG use in Europe. "The world and patients will benefit from more regionally balanced plasma collection,"…
¡Del 22 al 29 de abril, elevemos nuestra voz por un acceso equitativo a la atención médica para pacientes con #InmunodeficienciaPrimaria en todo el mundo! 💉 Es crucial que el diagnóstico temprano y el tratamiento de calidad sean una realidad para todos. @world_pi_week_
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