Connecting with others who understand PNH can make a big difference. 💜 Find local PNH patient groups on our website and know you’re not alone. 🌍 #PNHAwareness2025

PNH treatments can help patients feel almost symptom-free — but access still varies widely. Everyone deserves life-changing care, no matter where they live

✨ Welcome AFAG to the PNH Global Alliance! Since 2007, AFAG has been Brazil’s leading voice for PNH—supporting patients, advocating for access to care, and raising awareness. Together, we work so every person with PNH can live with dignity. 💜 #RareDiseases

🧡 On the month of World Mental Health Day, we’re reminded that mental health matters every day. Living with PNH can be tough, but no one should face it alone. Together we raise awareness, break stigma & support each other. 💜 #MentalHealthMatters #PNHCommunity

🔍 𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰? The PNH Global Alliance has interactive maps to find specialists & support groups worldwide. 🌍 You don’t have to face it alone. #PNHAwareness2025 #PNHVoices #DidYouKnow

𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰? The PNH Global Alliance is working together for the benefit of all PNH patients. #PNHAwareness2025 #DidYouKnow #PNHVoices #LivingWithPNH

🌟 𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰? Today is Global PNH Awareness Day! Let’s raise awareness for paroxysmal nocturnal hemoglobinuria (PNH), support patients, and action treatment access for all! 💙🩸 #PNHAwareness2025 #PNH #RareDisease #PatientSupport"

𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰? Raising #PNHAwareness can lead to earlier diagnosis, better care, and stronger patient communities. In Denmark, where Susan Thorpe lives, patients have access to a wide range of treatments, including newer therapies once only available compassionately. #PNHAwareness2025 #PNHVoices

𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰? Many people with rare diseases face isolation from lack of awareness. Priscilla (France): “The toll strains relationships—others don’t fully grasp our daily challenges.” France has had #PNHtreatments since 2007, with newer options added through early access. #PNHAwareness2025

𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰 there are 8 licensed #PNHtreatments but only in some countries? Access means better quality of life & near-normal survival. PNH patient Daniel Webby (NZ): “Before treatment I was withdrawn. After, life became much easier.” In NZ, treatment is only via trials or compassionate access.

𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰? PNH is rare, complex, and often misunderstood. This quick video explains what it is + why awareness matters. Let’s spread the word. #PNHAwareness2025 #DidYouKnow #PNHVoices #DidYouKnow

𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰? IPIG is validating the QLQ AA/PNH-54 quality of life questionnaire, the first disease-specific PROM for PNH & Aplastic Anemia. Watch out in case you are invited to take part. #PNH #PatientReportedOutcome #PROM #PNHResearch

𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰?PNH symptoms can include fatigue, pain, shortness of breath, clots&dark urine, but vary widely. For Nenad Pavlovic, from Serbia, years of bruising, low hemoglobin, and abdominal pain led to diagnosis. Today, patients in Serbia have only two official treatment options. #PNHAwareness2025

𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰? PNH is a rare, life-threatening blood disorder often linked to aplastic anemia. Cristina from Brazil: “I was treated for AA for 5 years… then I was finally diagnosed with PNH.” In Brazil, treatments exist, but delays between approval and access can last 180+ days. #PNHAwareness2025

🩸 𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰 about Extravascular Hemolysis (EVH) in #PNH? It can occur on C5-inhibitor treatment, PNH symptoms return as red blood cells are destroyed outside blood vessels. 📖 Fattizzo et al. Blood 2025 doi: doi.org/10.1182/bloo... #PNHAwareness2025 #DidYouKnow #KnowPNH

𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰 PNH has 3 types? 🔬 Classic – Symptoms like fatigue & clots 🔬 Subclinical – No symptoms, monitoring still needed 🔬 With Bone Marrow Failure – Severe anemia & complications Some show no symptoms, others are life-threatening. Knowing the difference can save lives. 💜 #PNHAwareness2025

𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰 Eculizumab is the only treatment for PNH currently licensed during pregnancy🤰? Research is exploring ravulizumab as another potential option. 🧪 #PNHAwareness2025 #LivingWithPNH #PregnancyCare #PatientSupport #PNHResearch #DidYouKnow

Did you know PNH is ultra-rare, but its symptoms are very real? Fatigue, dark urine, pain & difficulty swallowing can affect those living with it. Often misdiagnosed, improved awareness is key for timely treatment. #PNHAwareness2025 #DidYouKnow #PNHVoices #LivingWithPNH

Live from from the PNH Global Advocacy Forum. This weekend, patients and advocates are uniting in Barcelona, Spain, to build capcity for wider global advocacy. Community matters—together we are stronger and can drive real change. #PNHGlobalAdvocacyForum #PNHAwareness2025 #PNHSupport

The International PNH Registry, sponsored by IPIG, includes patients from 20 countries (regardless of treatment) and is growing worldwide. 🌍 Data will help answer key questions about PNH & its treatments. 📊 526 enrolled so far, and still open! #PNHAwareness2025 #PNHDay2025 #IPIGRegistry

We’re gearing up for #PNHDay on Oct 12! Our 2025 PNH Awareness Campaign starts now 💜 Over the next few weeks, we’ll share key facts, personal stories & updates on this ultra rare blood disorder. Let’s raise awareness together, because knowledge saves lives. #PNHAwareness2025 #TogetherForPNH

🔎 Looking for #PNH #ClinicalTrials? The PNH Global Alliance Clinical Trial Finder helps patients, caregivers & professionals: ✅ Stay up to date on research ✅ Access reliable info in one place 👉 Explore here: pnhglobalalliance.org/research/cli... Please share to help ensure no opportunity is missed.

🌟 Welcome PNH Patients Support–India! 🎉 Founded in 2020 as an informal group, they support PNH patients in India by sharing stories, advice, and advocacy. They’re working to bring medicines to India and push for PNH to be recognised as a rare disease. #PNHGlobalAlliance #PNHIndia #PNHCommunity

Managing PNH often takes a mix of treatments. Transfusions ease symptoms, supplements support blood cell production, and anticoagulants help prevent clots. Complement inhibitors protect cells, but access is limited. Global awareness and advocacy are still urgently needed. #PNHAwareness #PNHSupport

Let’s talk symptoms. PNH is rare, but its symptoms are very real and often misdiagnosed. Fatigue, dark urine, pain, or clots could be overlooked. Patients & HCPs: If signs don’t add up, ask: could it be PNH? #PNHAwareness #PNHSupport

🧠 Need clear, reliable info on PNH? Check our resources page with the latest updates on care, treatment & support—all in one place. 🔗https://pnhglobalalliance.org/resources/ Share with patients & providers. #PNH #TreatingPNH #RareDisease

🌍 We're thrilled to welcome PNH Nordic to the PNH Global Alliance! 💜 Founded in 2024, this group supports PNH patients & families across the Nordic region. Their mission aligns with ours — stronger together! 💪 #PNHGlobalAlliance #PNHNordic #PatientAdvocacy

Excited to announce the Global PNH Advocacy Forum near Barcelona, Sept 12–14, 2025! Join advocates, alliance members & global reps to connect, share, and strengthen PNH advocacy worldwide. #PNHAdvocacy #PatientAdvocacy #PNHCommunity #PNH

☀️ Summer Tips for PNH 💧 Hydrate well 🛌 Rest often 😎 Stay cool 🧴 Use sunscreen (esp. if meds increase sensitivity) Avoid heat, pace yourself, and protect your skin. Enjoy summer safely! #PNH #RareDisease #SummerHealth #StayHydrated #FatigueManagement

🌏 Welcome, PNH Support Association of New Zealand! Thrilled to have you join our global PNH alliance. 🇳🇿 Supporting 25+ patients since 2012, they’re champions of advocacy, awareness & connection across Aotearoa. Here’s to growing together! 🌟 #RareDisease #PNH

Up to 96% of untreated PNH patients suffer from debilitating fatigue. PNH is a rare blood disorder that’s often missed. Fatigue is a key, overlooked symptom. 💡 Early diagnosis matters. Talk to a doctor if symptoms appear. #PNH #RareDiseaseAwareness #Fatigue #EarlyDiagnosis

The PNH Global Alliance joined #EHA2025 in Milan with strong advocacy presence. We highlighted global treatment inequities, patient voice in care, & the need for action. Only ~30% of countries have access to PNH therapies. We continue pushing for change. #PNH #PatientAdvocacy

Tomorrow is #WorldBloodDonorDay! 🩸 Blood donations are vital for people with PNH and many others. If you're able, consider donating — it truly makes a difference. #DonateBlood #PNH #PNHCommunity #BloodDonation

🌍 Exciting news! The PNH Alliance will be at #EHA2025 in Milan 🇮🇹 (June 12–15)! We're excited to connect, share insights, and advance the conversation on rare blood disorders like PNH. Come meet us! #PNH #Hematology

You’re not alone with PNH. Support groups offer connection, hope, and strength for patients and caregivers. Find yours today: pnhglobalalliance.org/resources/gl... 💜 #PNHSupport #PNHCommunity #LivingWithPNH #SupportGroups

Proud to share that Pascale Burmester spoke on behalf of the PNH Global Alliance at the 2nd IPIG Conference in Paris 🇫🇷 on the role of patient advocates in R&D. Key takeaway: collaboration leads to better, more impactful outcomes! 💡🌍 #PNH #PatientAdvocacy #IPIG2025

PNH specialists are key to better health outcomes. 👩‍⚕️ Find the right care with our interactive map to connect with specialists near you! 🗺️ Access this valuable resource here: pnhglobalalliance.org/resources/ex... #PNHSpecialists #PNHSupport #LivingWithPNH

Ignoring PNH isn’t an option. Without treatment, risks rise fast: 🫁 50% develop Pulmonary Hypertension ⚠️ 40% face deadly blood clots ❤️ 20% die from heart issues 🚨 65% have kidney damage 🩸 VTE risk is 62x higher 🔬 Clone growth = 4x clot risk Early care saves lives!

🧪 Results from the Oct 2024 survey on QoL in AA/PNH patients are now published in Annals of Hematology! Fatigue, fear of progression & illness intrusiveness ranked highest. 📖 Read more: link.springer.com/article/10.1... #AA #PNH #PatientVoice

🚨 New EURORDIS Rare Barometer survey reveals major challenges for 30M people with rare diseases in Europe: 🔹 8 in 10 live with disabilities 🔹 50%+ struggle to access public support 🔹 79% face barriers in school 🔹 Unemployment 4x higher 📖 www.eurordis.org/rare-baromet... #RareDiseases

If you have PNH, your doctor may invite you to join the IPIG PNH Registry. It’s a global study managed by IPIG to better understand PNH and its treatments. Your doctor will provide your health data and you will complete questionnaires about quality of life every 6 months. Participation is voluntary!

📢 Exciting news! IPIG & Max Foundation join forces to improve PNH care in 53 low-resource countries. Through the Max PACT program, this collaboration expands access to innovative treatments & medical training, tackling thrombosis risk & improving lives. #PNH #HealthEquity

Living with PNH? Small changes can make a big difference! Self-care tips for better well-being: 🔋 Manage fatigue with a balanced routine 🍎💧 Eat well & stay hydrated 🏃‍♀️ Exercise gently 💉 Stick to your treatment plan 🧘‍♀️ Reduce stress Prioritize your health! #PNH #LivingWithPNH

New EU Clinical Trial Map! 🗺️ The EMA has launched a tool to easily find PNH & other trials across Europe. Key Features: ✅ Real-time data (CTIS) ✅ Search by condition & location ✅ Clear, patient-friendly info Explore here 👉 euclinicaltrials.eu/search-for-c... #PNH #ClinicalTrials #Research

🔬 PNH has different types, each with unique challenges: ✨ Classic PNH – Hemolysis, thrombosis, fatigue, & more. Early detection is key! 🩸 Subclinical PNH – No symptoms but needs monitoring. 🧬 PNH + Bone Marrow Failure – Seen with AA/MDS, causing severe anemia. Awareness saves lives! #PNH

Living with PNH can be filled with challenges—fatigue, pain, and uncertainty. But the invaluable support of family and loved ones makes all the difference. 💙 To all caregivers: your emotional strength, practical help, and advocacy keep PNH patients going. Thank you! ✨ #PNH #Support #PNHAdvocacy

Today we celebrate #RareDiseaseDay, we shine a spotlight on PNH and the rare disease community. Living with PNH means navigating challenges that require strength, resilience, and community support. Let’s unite to raise awareness - together, we can bring visibility to the unseen!

🌍🗣️ On #InternationalMotherLanguageDay, we celebrate the power of language in connecting and empowering the #PNH community. Sharing info & support in your own language brings comfort & understanding. Let’s advocate for multilingual care! ❤️ #PNHAwareness #LanguageInclusivity

💉 Paroxysmal Nocturnal Hemoglobinuria (PNH) is rare, but advancements in treatment help improve patients' outlook. While there’s no cure, therapies target red blood cell destruction, reduce blood clot risks, & manage symptoms like anaemia. Hope for a better future! #PNHTreatment

On #WorldCancerDay, we stood with everyone affected by cancer. 🎗️ Did you know PNH is linked to bone marrow disorders that may increase bone cancer risk, like AML? Early detection is key! PNH Global Alliance advocates for regular screenings & care. 🩸 #PNHAwareness #BoneMarrowHealth