Aplastische Anämie & PNH e.V.

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PNH patient Daniel Webby (NZ): “Before treatment I was withdrawn.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

das Video ist als Repost über diesem Post zu finden!

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

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

IPIG validiert derzeit den Fragebogen zur Lebensqualität QLQ AA/PNH-54, den ersten krankheitsspezifischen PROM für PNH und aplastische Anämie. Achten Sie darauf, falls Sie zur Teilnahme eingeladen werden.
#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

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

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

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

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 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 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

🔎 Looking for the latest PNH clinical trials?

Our Clinical Trial Finder is always available on our website! It provides an overview of ongoing PNH clinical trials in each country, helping you stay informed about new research opportunities. Check it here! pnhglobalalliance.org/research/cli...

💉 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