PNH Global Alliance
@pnhglobalalliance.bsky.social
An alliance of global patient organisations supporting those living with PNH
https://pnhglobalalliance.org/
https://pnhglobalalliance.org/
On Universal Health Coverage Day, we stand for equal access to quality care for everyone with PNH. Early diagnosis, treatment, and support should be available to all 🌟 #UHC #PNH #HealthForAll
December 12, 2025 at 8:45 PM
On Universal Health Coverage Day, we stand for equal access to quality care for everyone with PNH. Early diagnosis, treatment, and support should be available to all 🌟 #UHC #PNH #HealthForAll
Welcome, PNH Srbija! 🌟
We’re thrilled to have them join the PNH Global Alliance—bringing strong commitment to patient support, trusted info, advocacy, and global collaboration.
We’re thrilled to have them join the PNH Global Alliance—bringing strong commitment to patient support, trusted info, advocacy, and global collaboration.
November 28, 2025 at 9:45 AM
Welcome, PNH Srbija! 🌟
We’re thrilled to have them join the PNH Global Alliance—bringing strong commitment to patient support, trusted info, advocacy, and global collaboration.
We’re thrilled to have them join the PNH Global Alliance—bringing strong commitment to patient support, trusted info, advocacy, and global collaboration.
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
November 21, 2025 at 8:45 AM
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
November 14, 2025 at 8:00 AM
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
October 31, 2025 at 9:01 AM
✨ 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
October 24, 2025 at 8:01 AM
🧡 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
The PNH Global Alliance has interactive maps to find specialists & support groups worldwide. 🌍 You don’t have to face it alone.
#PNHAwareness2025 #PNHVoices #DidYouKnow
October 12, 2025 at 3:30 PM
🔍 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
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
#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
🌟 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"
Let’s raise awareness for paroxysmal nocturnal hemoglobinuria (PNH), support patients, and action treatment access for all! 💙🩸
#PNHAwareness2025 #PNH #RareDisease #PatientSupport"
October 12, 2025 at 8:01 AM
🌟 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"
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
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
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
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.
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
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
#PNH #PatientReportedOutcome #PROM #PNHResearch
October 7, 2025 at 1:02 PM
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
#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
#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
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
🩸 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
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
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
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
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
#PNHGlobalAdvocacyForum #PNHAwareness2025 #PNHSupport
September 13, 2025 at 2:49 PM
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
#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
#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
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
🔎 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.
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.
August 29, 2025 at 7:00 AM
🔎 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.
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
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
August 22, 2025 at 7:00 AM
🌟 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
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