Aplastische Anämie & PNH e.V.
@aaundpnhev.bsky.social
German patient advocacy group for Aplastic Anaemia (AA) and Paroxysmal Nocturnal Haemoglobinuria (PNH)
🔍 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
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
October 12, 2025 at 1:31 PM
🔍 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
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
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
October 12, 2025 at 1:24 PM
🌟 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
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
Reposted by Aplastische Anämie & PNH e.V.
𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰? The PNH Global Alliance is working together for the benefit of all PNH patients.
#PNHAwareness2025 #DidYouKnow #PNHVoices #LivingWithPNH
#PNHAwareness2025 #DidYouKnow #PNHVoices #LivingWithPNH
October 12, 2025 at 11:01 AM
𝐃𝐢𝐝 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰? The PNH Global Alliance is working together for the benefit of all PNH patients.
#PNHAwareness2025 #DidYouKnow #PNHVoices #LivingWithPNH
#PNHAwareness2025 #DidYouKnow #PNHVoices #LivingWithPNH
Reposted by Aplastische Anämie & PNH e.V.
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
October 11, 2025 at 7:01 AM
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
Reposted by Aplastische Anämie & PNH e.V.
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.
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.
October 9, 2025 at 7:02 AM
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.
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.
Reposted by Aplastische Anämie & PNH e.V.
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
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
October 10, 2025 at 7:03 AM
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
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
Reposted by Aplastische Anämie & PNH e.V.
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
This quick video explains what it is + why awareness matters.
Let’s spread the word.
#PNHAwareness2025 #DidYouKnow #PNHVoices #DidYouKnow
October 8, 2025 at 7:02 AM
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
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
Dieses kurze Video erklärt, was es ist und warum Aufklärung wichtig ist.
Lassen Sie uns das Wort verbreiten.
#PNHAwareness2025 #WusstenSieSchon #PNHVoices #WusstenSieSchon
October 8, 2025 at 8:23 PM
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
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
#PNH #PatientReportedOutcome #PROM #PNHResearch
October 7, 2025 at 7:35 PM
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
#PNH #PatientReportedOutcome #PROM #PNHResearch
Reposted by Aplastische Anämie & PNH e.V.
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
#PNHAwareness2025
October 7, 2025 at 7:02 AM
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
#PNHAwareness2025
Reposted by Aplastische Anämie & PNH e.V.
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
In Brazil, treatments exist, but delays between approval and access can last 180+ days. #PNHAwareness2025
October 6, 2025 at 7:01 AM
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
In Brazil, treatments exist, but delays between approval and access can last 180+ days. #PNHAwareness2025
Reposted by Aplastische Anämie & PNH e.V.
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
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
September 5, 2025 at 10:00 AM
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
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
Reposted by Aplastische Anämie & PNH e.V.
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
#PNHAwareness2025 #PNHDay2025 #IPIGRegistry
September 12, 2025 at 10:20 AM
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
#PNHAwareness2025 #PNHDay2025 #IPIGRegistry
Reposted by Aplastische Anämie & PNH e.V.
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
#PNHAwareness2025 #DidYouKnow #PNHVoices #LivingWithPNH
September 19, 2025 at 7:01 AM
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
#PNHAwareness2025 #DidYouKnow #PNHVoices #LivingWithPNH
Reposted by Aplastische Anämie & PNH e.V.
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
#PNHAwareness2025 #LivingWithPNH #PregnancyCare #PatientSupport #PNHResearch #DidYouKnow
September 22, 2025 at 7:01 AM
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
#PNHAwareness2025 #LivingWithPNH #PregnancyCare #PatientSupport #PNHResearch #DidYouKnow
Reposted by Aplastische Anämie & PNH e.V.
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
🔬 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
September 26, 2025 at 7:01 AM
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
🔬 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
Reposted by Aplastische Anämie & PNH e.V.
🩸 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
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
September 29, 2025 at 7:01 AM
🩸 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
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
Reposted by Aplastische Anämie & PNH e.V.
🔎 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...
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...
January 31, 2025 at 11:53 AM
🔎 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...
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...
Reposted by Aplastische Anämie & PNH e.V.
💉 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
February 14, 2025 at 12:54 PM
💉 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