🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Today is Global PNH Awareness Day!🎉🌍Thank you for your support during our campaign. We've raised awareness and supported those affected by PNH. Stay tuned for more!. Let’s make every day a step closer to equal care and treatment. #PNHAwareness2024 #TreatingPNH

#DidYouKnow We’ve created an interactive map to help you easily find and contact PNH specialists? This tool makes it easier to find the right support. 🗺️ #PNHAwareness2024

If you are #TreatingpPNH, please consider consulting a PNH specialist in your country! 👩‍⚕️ #PNHAwareness2024 Check the map on our website!

Access to clinical trial information is vital. #DidYouKnow that our Clinical Trial Finder helps you discover what trials are taking place and where? Trials offer early access to new treatments and advance research. Visit our website to explore them! #TreatingPNH #PNHAwareness2024

#DidYouKnow we have a new resource page on our website? 📚✨ It consolidates all recent updates, making it easy to stay informed and keep updated. #PNHAwareness2024

If you are #TreatingPNH, please check out our new resource page and share it with your patients! #PNH #PatientCare #HealthcareResources #PNHAwareness2024

The Global PNH Alliance was proudly represented by Izabela from One in a Million at the Complement Masters: PNH 2024 in Tallinn, Estonia! She shared the mission, vision&value the Alliance brings to the PNH community with experts from around the world. 🌍 #PNH #GlobalPNHAlliance

Maria Piggin, Chair of the PNHGA, was invited to the PNH: At the crossroads of somatic mutations, clonal expansion and immunity Meeting on Oct 3-4 in Florence. She presented on PNHGA’s work, including the PNH Advocate Development Programme & the 1st Global Awareness Day on Oct 12

🧡 On October 10th, we celebrated World Mental Health Day! 🧡 Living with PNH is challenging, but you are not alone. Together, we create a supportive community where every patient is heard and valued. Let's keep raising awareness and breaking the stigma. 🌟 #MentalHealth

🌍Introducing the International PNH Interest Group (IPIG): A global network of 400+ physicians from 55 countries, dedicated to advancing knowledge and improving care for PNH patients. The only global society focused exclusively on PNH treatment! pnhinterestgroup.org

🌍EuroBloodNet, established in 2017, is the EU Reference Network for Rare Hematological Diseases. They ensure equitable access to specialized care, promote best practices, and enhance education for RHD patients. Check their work here!: eurobloodnet.eu 💙 #RareDiseases

🎉 The PNHGA Advocate Development Program concludes! From Dec 2023 to Nov 2024, participants learned about PNH, treatments, research, and advocacy, among others. Highlights included in-person connections at EHA Madrid 2024. Huge thanks to everyone involved! 🙌💙 #PNH #Advocacy

📅 On Nov 25, the Alexion-led PNH Registry held its final Executive Committee meeting. Since 2004, it enrolled ~6,000 patients, advancing PNH care. Big thank you to Alexion and the patients whose data made groundbreaking progress possible!

🌍 At PNH Global Alliance, we are committed to ensuring quality of life for PNH patients is truly measured. Tools like the QLQ-AA/PNH 54 go beyond hemoglobin levels, assessing fatigue, focus, and well-being. 📄 Read more: pnhglobalalliance.org/wp-content/upl… 🎥 Watch: youtu.be/U2NpQLnBKSI

This is very positive news for #PNH patients in low & middle income countries for whom #access to #lifesaving treatment is unavailable

🌍 Other PNH Research: Ethnographic Research Findings on the Everyday Challenges of People with PNH in Three Countries🌍We are highlighting research that dives into the lived experiences of PNH patients receiving C5 inhibitor treatment across Europe! omicsonline.org/open-access/a-…

This month, we celebrated Universal Health Coverage Day. We believe that every person living with PNH deserves equal access to quality healthcare, no matter where they live. Let’s advocate for stronger health systems and ensure that no one is left behind.

As the year draws to a close and many of us gather with loved ones, we’re reminded of the power of connection and community. Let’s take this time to reflect on the year past and look ahead with hope and determination. We are grateful for each member of this community!❄️💙🌍

Research highlights challenges for PNH patients on C5 inhibitors in France, Germany & the UK. A survey reveals unmet needs in addressing symptoms & QoL despite current therapies. Insights call for improved treatments 🔎📑 Read more: onlinelibrary.wiley.com/doi/10.1111/ej…

🔎New research on patients receiving C5 inhibitors shows challenges. Many still experience low Hb levels, transfusion dependence, and frequent hospital visits despite treatment. These findings highlight the need for improved therapies and support systems. tandfonline.com/doi/full/10.10…