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

🔍 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

🔍 Wussten Sie schon?
Die PNH Global Alliance verfügt über interaktive Karten, mit denen Sie weltweit Spezialisten und Selbsthilfegruppen finden können. 🌍
Sie müssen sich dieser Herausforderung nicht alleine stellen.
#PNHAwareness2025 #PNHVoices #DidYouKnow

🌟 Heute ist der weltweite PNH-Aktionstag!
Lasst uns das Bewusstsein für paroxysmale nächtliche Hämoglobinurie (PNH) schärfen, Patienten unterstützen und uns für den Zugang zu Behandlungen für alle einsetzen! 💙🩸

#PNHAwareness2025 #PNH #RareDisease #PatientSupport #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

Wussten Sie schon? PNH ist selten, komplex und wird oft missverstanden.
Dieses kurze Video erklärt, was es ist und warum Aufklärung wichtig ist.
Lassen Sie uns das Wort verbreiten.
#PNHAwareness2025 #WusstenSieSchon #PNHVoices #WusstenSieSchon

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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.

www.facebook.com/reel/1231649...

#PNHAwareness2025 #DidYouKnow #PNHVoices #DidYouKnow

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

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 #PNHAwareness2025 #DidYouKnow

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