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

𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰? The PNH Global Alliance is working together for the benefit of all PNH patients.

#PNHAwareness2025 #DidYouKnow #PNHVoices #LivingWithPNH

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PNH patient Daniel Webby (NZ): “Before treatment I was withdrawn.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?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