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PNH Global Alliance @pnhglobalalliance.bsky.social · 4h

🔍 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

PNH Global Alliance @pnhglobalalliance.bsky.social · 8h

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

#PNHAwareness2025 #DidYouKnow #PNHVoices #LivingWithPNH

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PNH Global Alliance @pnhglobalalliance.bsky.social · 11h

🌟 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"

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PNH Global Alliance @pnhglobalalliance.bsky.social · 1d

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

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PNH Global Alliance @pnhglobalalliance.bsky.social · 2d

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

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PNH Global Alliance @pnhglobalalliance.bsky.social · 3d

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PNH patient Daniel Webby (NZ): “Before treatment I was withdrawn.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

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PNH Global Alliance @pnhglobalalliance.bsky.social · 4d

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

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PNH Global Alliance @pnhglobalalliance.bsky.social · 5d

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

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PNH Global Alliance @pnhglobalalliance.bsky.social · 5d

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

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PNH Global Alliance @pnhglobalalliance.bsky.social · 6d

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

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PNH Global Alliance @pnhglobalalliance.bsky.social · 13d

🩸 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

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PNH Global Alliance @pnhglobalalliance.bsky.social · 16d

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

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PNH Global Alliance @pnhglobalalliance.bsky.social · 20d

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

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PNH Global Alliance @pnhglobalalliance.bsky.social · 23d

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

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PNH Global Alliance @pnhglobalalliance.bsky.social · 29d

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

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PNH Global Alliance @pnhglobalalliance.bsky.social · Sep 12

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

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PNH Global Alliance @pnhglobalalliance.bsky.social · Sep 5

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

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PNH Global Alliance @pnhglobalalliance.bsky.social · Aug 29

🔎 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.

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PNH Global Alliance @pnhglobalalliance.bsky.social · Aug 22

🌟 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

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PNH Global Alliance @pnhglobalalliance.bsky.social · Aug 15

Managing PNH often takes a mix of treatments. Transfusions ease symptoms, supplements support blood cell production, and anticoagulants help prevent clots. Complement inhibitors protect cells, but access is limited. Global awareness and advocacy are still urgently needed.
#PNHAwareness #PNHSupport

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PNH Global Alliance @pnhglobalalliance.bsky.social · Aug 8

Let’s talk symptoms.
PNH is rare, but its symptoms are very real and often misdiagnosed. Fatigue, dark urine, pain, or clots could be overlooked.
Patients & HCPs: If signs don’t add up, ask: could it be PNH?
#PNHAwareness #PNHSupport

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PNH Global Alliance @pnhglobalalliance.bsky.social · Aug 1

🧠 Need clear, reliable info on PNH?
Check our resources page with the latest updates on care, treatment & support—all in one place.

🔗https://pnhglobalalliance.org/resources/
Share with patients & providers.

#PNH #TreatingPNH #RareDisease

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PNH Global Alliance @pnhglobalalliance.bsky.social · Jul 25

🌍 We're thrilled to welcome PNH Nordic to the PNH Global Alliance! 💜 Founded in 2024, this group supports PNH patients & families across the Nordic region. Their mission aligns with ours — stronger together! 💪

#PNHGlobalAlliance #PNHNordic #PatientAdvocacy

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PNH Global Alliance @pnhglobalalliance.bsky.social · Jul 18

Excited to announce the Global PNH Advocacy Forum near Barcelona, Sept 12–14, 2025!
Join advocates, alliance members & global reps to connect, share, and strengthen PNH advocacy worldwide.
#PNHAdvocacy #PatientAdvocacy #PNHCommunity #PNH

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PNH Global Alliance @pnhglobalalliance.bsky.social · Jul 11

☀️ Summer Tips for PNH 💧 Hydrate well 🛌 Rest often 😎 Stay cool 🧴 Use sunscreen (esp. if meds increase sensitivity) Avoid heat, pace yourself, and protect your skin. Enjoy summer safely! #PNH #RareDisease #SummerHealth #StayHydrated #FatigueManagement