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ANE International

@aneinternational.bsky.social
62 followers 103 following 71 posts

We aim to raise awareness, provide information & support families with #AcuteNecrotizingEncephalopathy. A devastating disease that affects the brain & is typically triggered by influenza & other viruses. www.aneinternational.org

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ANE International @aneinternational.bsky.social · 18/07/2026
🗓️ANE Awareness Day is on July 31 We’ll be sharing posts across social media, we’d love you to share them too. Every share helps someone learn about a disease they’ve never heard of & may just save a life. Save the date and get ready to join us. #AcuteNecrotizingEncephalopathy #Influenza #PedsICU
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CT Rare Advocate @rarectadvocate.com · 02/07/2026
Acute Necrotizing Encephalopathy (ANE) is a rare brain disorder triggered by viral infections like influenza. A cytokine storm destroys deep brain tissue Learn more: aneinternational.org You may be rare, but you're not alone! #rareDisease #rareDiseaseAwareness
Info card for Acute Necrotizing Encephalopathy (ANE), a rare neurological disorder in which a viral infection triggers a cytokine storm that destroys deep brain structures, particularly the thalami. The card notes that about one-third of patients do not survive and half of survivors have permanent brain damage. Key symptoms include rapid-onset seizures, altered consciousness, and bilateral thalamic lesions on MRI. Footer reads: "You may be rare, but you're not alone!" rarectadvocate.com
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ANE International @aneinternational.bsky.social · 04/05/2026
#AcuteNecrotizingEncephalopathy
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ANE International @aneinternational.bsky.social · 09/03/2026
Congratulations @sdesgraupes.bsky.social #AcuteNecrotizingEncephalopathy
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ANE International @aneinternational.bsky.social · 07/11/2025
We love this little guy and his family. Like many ANE parents, they are such great advocates. ##vaccinessavelives #AcuteNecrotizingEncephalopathy #influenza #AcquiredBrainInjury
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Voices for Vaccines @voices4vaccines.bsky.social · 08/10/2025
This organization does important work around a complication of vaccine-preventable disease, and has helped us share some stories about influenza. You should follow them!
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ANE International @aneinternational.bsky.social · 08/10/2025
Neurological complications from #influenza - ANE is one that Doctors dread. It typically occurs in previously healthy children. ##vaccinessavelives #ANEawareness Check our website for symptoms to be aware of. www.aneinternational.org
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ANE International @aneinternational.bsky.social · 05/10/2025
#ANEawareness #AcuteNecrotizingEncephalopathy
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ANE International @aneinternational.bsky.social · 29/09/2025
#AcuteNecrotizingEncephalopathy #RanBP2 #Genetics
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Alt CDC (they/them) @altcdc.altgov.info · 26/09/2025
5/ A really bad form of this is acute necrotizing encephalopathy, leading to literal brain damage 🧠 37 kids got this - from flu And the worst bit is only 16% of the kids with flu-related encephalopathy who could get a flu shot had actually gotten one GET 👏 YOUR 👏 FLU 👏 SHOT
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Lucia Ruggiero @lruggiero.bsky.social · 25/09/2025
Pediatric Influenza-Associated Encephalopathy and Acute Necrotizing Encephalopathy — United States, 2024–25 Influenza Season | MMWR www.cdc.gov/mmwr/volumes...
cdc.gov
Pediatric Influenza-Associated Encephalopathy ...
This report describes 109 U.S. cases of pediatric influenza-associated encephalopathy during the 2024–25 flu season – a high-severity season.
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ANE International @aneinternational.bsky.social · 26/09/2025
#influenza #AcuteNecrotizingEncephalopathy www.nbcnews.com/health/healt...
nbcnews.com
More kids are severely ill or dying from the flu, CDC reports
As fewer children get their flu shots, cases of a rare, severe complication are rising. Last season, the U.S. experienced the highest number of pediatric flu deaths in 15 years.
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J. Offir, PhD @joffirphd.bsky.social · 13/09/2025
Acute necrotizing encephalopathy is a rare but incredibly serious complication of infections like flu & covid. It often causes severe disability or death. Please get your kids their covid & flu vaccines; the families reported on in this story have to live w/ regret. www.nytimes.com/2025/09/12/h...
nytimes.com
Rare but Serious Complication Shows Flu’s Potential Harm
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ingohelbig.bsky.social @ingohelbig.bsky.social · 28/08/2025
Influenza and acute necrotizing encephalopathy – the genetic dimension ANE. A rare complication with hidden genetic clues. Imagine a healthy child who goes to bed with a fever and wakes up unable to recognize their parents, slipping rapidly into coma. This is the terrifying course of acute…
epilepsygenetics.blog
Influenza and acute necrotizing encephalopathy – the genetic dimension
ANE. A rare complication with hidden genetic clues. Imagine a healthy child who goes to bed with a fever and wakes up unable to recognize their parents, slipping rapidly into coma. This is the terrifying course of acute necrotizing encephalopathy (ANE), one of the most severe neurological complications of influenza. In a recent study, children with influenza who developed ANE showed an unexpected pattern: nearly half of those tested carried genetic variants that might predispose them to this devastating complication.
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ANE International @aneinternational.bsky.social · 20/08/2025
1️⃣ ANE while rare, is extremely serious, it can be deadly within a short period of time. 2️⃣ Most children with ANE were previously healthy. 3️⃣ Most of those with ANE & nearly all of those who died had not received the flu vaccine that season." #influenza #vaccineswork #acutenecrotizingencephalopathy
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ANE International @aneinternational.bsky.social · 15/08/2025
👶Jasper was a happy, thriving 11 month old. Then, an unknown virus triggered ANE. 📖 In this new story, Jasper's mother shares their experience & captures the devastating speed & impact of #AcuteNecrotizingEncephalopathy. Read Here➡️ aneinternational.org/jasper/ #PedsICU #medicalemergency #virus
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mtfamilies4vax.bsky.social @mtfamilies4vax.bsky.social · 09/08/2025
“I felt like I was robbed, we were robbed, of the opportunity to protect our children.” Zach lost his daughter to influenza before the vaccine was recommended for all kids. If you’re a parent here’s what he has to say. youtu.be/5zBrARHsayE?... #NIAM2025
youtu.be
Why it's not "just the flu."
YouTube video by Voices for Vaccines
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CIDRAP @cidrap.bsky.social · 05/08/2025
Influenza, not Tamiflu, may raise risk of neuropsychiatric events in kids Treatment with oseltamivir was associated with an approximately 50% reduction in the incidence of serious neuropsychiatric events. www.cidrap.umn.edu/i...
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ANE International @aneinternational.bsky.social · 06/08/2025
🎥 In this expert talk, Dr. Ming Lim, Head of Children’s Neuroscience at Evelina London Children’s Hospital and King’s College London, breaks down the science behind ANE—and explains why early recognition and genetic testing matter. #medsky #genetics #ANEawareness m.youtube.com/watch?v=edV0...
m.youtube.com
Acute Necrotising Encephalopathy in Childhood: Genetic vs Sporadic | Dr. Ming Lim at ANEmone 2025
YouTube video by ANE International
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ANE International @aneinternational.bsky.social · 05/08/2025
#ANEawareness #AcuteNecrotizingEncephalopathy
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ANE International @aneinternational.bsky.social · 05/08/2025
📌 We’ve laid out the facts. Now, we share another experience with #AcuteNecrotizingEncephalopathy (ANE)—because no two journeys are the same. 📖 One name. Many paths. Here's one more. Read here ➡️ aneinternational.org/meredith/ #ANEawareness #i̇nfluenza #covid #RSV #virus #acquiredbraininjury #HHSV
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ANE International @aneinternational.bsky.social · 04/08/2025
#AcuteNecrotizingEncephalopathy (ANE) may be the shared diagnosis—but every story unfolds uniquely. 🫶❤️📖 By sharing these diverse paths, we deepen awareness. One story at a time. #ANEawareness #i̇nfluenza #VaccinePreventableDisease #virus #acquiredbraininury aneinternational.org/stories/aust...
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Samir S. Shah @samirshahmd.bsky.social · 03/08/2025
Two major points on influenza-associated acute necrotizing encephalopathy - High mortality (27%) - Most affected children were unvaccinated & did not have major comorbid conditions #PedSky #IDSky
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ANE International @aneinternational.bsky.social · 03/08/2025
📋 We've shared the facts. Now, it’s time to meet the voices of lived reality. #AcuteNecrotizingEncephalopathy isn’t just numbers—it’s real people, real families, and stories that deserve to be heard. #ANEawareness #i̇nfluenza #RSV #covid #VPD Video ➡️ aneinternational.org/grayson/
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ANE International @aneinternational.bsky.social · 02/08/2025
#AcuteNecrotizingEncephalopathy The impact of #influenza assoc ANE - www.aneinternational.org "No one saw this coming. All of his symptoms were masked by “regular” flu symptoms. All we were told by every Dr from then on was to pray & hope for a miracle”. aneinternational.org/jesse-3/ #braininjury
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ANE International @aneinternational.bsky.social · 31/07/2025
🤒#ANEawareness Day - Learn more about ANE at www.aneinternational.org #AcuteNecrotizingEncephalopathy. A disease that affects healthy kids from common viruses such as #influenza. Help us spread awareness today. www.nbcnews.com/news/amp/rcn...
nbcnews.com
Rare flu complication causing brain swelling is rising in kids, doctors warn
Acute necrotizing encephalopathy is deadly in more than a quarter of kids diagnosed with the inflammatory brain disease.
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ANE International @aneinternational.bsky.social · 30/07/2025
ANE: The Brain Emergency Every Doctor Should Recognize. #AcuteNecrotizingEncephalopathy #ANEAwareness #ANE1 #SickKidsToronto #PediatricNeurology #Influenza #BrainHealth #EmergencyPediatrics #RareDiseaseAwareness #ViralEncephalopathy @arhelnathalie.bsky.social m.youtube.com/watch?v=ywrf...
m.youtube.com
ANE Clinical Overview: Symptoms, Diagnosis, and Treatment | Dr. E. Ann Yeh at ANEmone 2025
YouTube video by ANE International
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ANE International @aneinternational.bsky.social · 30/07/2025
⚡️ANE can strike without warning in anyone, at any age. Read more: aneinternational.org/thestrongfam... #influenza #braininjury #acutenecrotizingencephalopathy
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ANE International @aneinternational.bsky.social · 29/07/2025
🦠Influenza, RSV, chicken pox, measles, roseola and covid19 are all common viruses. All are associated with ANE. 👨‍👩‍👧‍👦Together, we raise awareness. 👨‍👩‍👧‍👦Together, we save lives. 📚What is ANE? You can also learn more on our website - aneinternational.org/acute-necrot... #ANEawareness #abi #influenza
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ANE International @aneinternational.bsky.social · 29/06/2025
Acute Necrotizing Encephalopathy is a rare type of brain disease that occurs following a viral infection such as #influenza. It typically affects previously healthy children. Learn more - www.aneinternational.org
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Suja Somanadhan @sujas.bsky.social · 22/04/2025
Caring for a child with a #RareDisease comes with #financial, #social, and #emotional challenges. We want to understand your experience to create positive change. Share your voice! 🎥 Watch short video shorturl.at/3zmru 👉Take part in the SURVEY tinyurl.com/bdhwd2az
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ERDERA @erdera.bsky.social · 15/04/2025
🇪🇺 The EU Rare Disease Conference 2025 in Warsaw closed with a powerful message: Europe must act together to change the future for rare disease patients. Here are some of the key highlights 👉 loom.ly/1OWMODE Promising outcomes ahead for the rare disease community! 🚀✨ #RareDisease #ERDERA #EUpolicy
loom.ly
EU rare disease conference concludes in Warsaw with renewed focus on early diagnosis and collaborative research - ERDERA
The two-day conference at the Medical University of Warsaw, held under the auspices of the Polish Presidency of the EU Council, concluded with a strong appeal for more integrated research, faster diag...
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Nathalie J Arhel @arhelnathalie.bsky.social · 28/03/2025
Our latest collaborative study with the Pasteur Institute and University of Toronto on the role of RANBP2 in #influenza -associated hyperinflammation #AcuteNecrotizingEncephalopathy @aneinternational.bsky.social @ribonucleicacids.bsky.social @irim-life.bsky.social www.biorxiv.org/content/10.1...
biorxiv.org
The genetic driver of Acute Necrotizing Encephalopathy, RANBP2, regulates the inflammatory response to Influenza A virus infection
Influenza virus infections can cause severe complications such as Acute Necrotizing Encephalopathy (ANE), which is characterised by rapid onset pathological inflammation following febrile infection. H...
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ANE International @aneinternational.bsky.social · 23/03/2025
#Acutenecrotizingencephalopathy #ANEandUs
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ANE International @aneinternational.bsky.social · 28/02/2025
#RareDiseaseDay is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, & access to diagnosis and therapies for people living with a rare disease. #AcuteNecrotizingEncephalopathy
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BK. Titanji @boghuma.bsky.social · 27/02/2025
1/ In Jan 2025, CDC received reports of children w severe influenza-associated encephalopathy (IAE), including cases of acute necrotizing encephalopathy (ANE), a rare but life-threatening complication. Several cases were fatal. The CDC investigated trends in IAE deaths.🧵 www.cdc.gov/mmwr/volumes...
cdc.gov
Reports of Encephalopathy Among Children ...
This report describes cases of influenza-associated encephalopathy or encephalitis among children during 2010-11 through 2024-25 flu seasons.
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ANE International @aneinternational.bsky.social · 27/02/2025
It's Rare Disease Day tomorrow. Rare Disease Day is the opportunity to advocate for rare diseases as a human rights priority at local, national and international level as we work towards a more inclusive society. #rarediseaseday #Acutenecrotizingencephalopathy #ANEawareness www.aneinternational.org
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Wendy Hasson, MD @wendyhassonmd.bsky.social · 25/02/2025
1/ Timely discussion at #SCCM2025 about pediatric influenza necrotizing encephalopathy. We are seeing more this season and is proving to be rapid & deadly. Take home points: -elevated IL-6 and plasma and CSF - flu + altered mental status = CT scan. We will overscan, but pts survive if caught early
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Scott Hadland, MD @drscotthadland.bsky.social · 25/02/2025
Another critical reason to consider vaccination for children >6 months: Flu has been linked to cases of ANE, or acute necrotizing encephalopathy. This serious neurological condition can result in brain swelling, seizures, and coma. 3/4
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ANE International @aneinternational.bsky.social · 26/02/2025
#AcuteNecrotizingEncephalopathy
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ANE International @aneinternational.bsky.social · 24/02/2025
#AcuteNecrotizingEncephalopathy #ANEawareness
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ANE International @aneinternational.bsky.social · 22/02/2025
#acutenecrotizingencephalopathy
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ANE International @aneinternational.bsky.social · 18/02/2025
The reality of #influenza associated #AcuteNecrotizingEncephalopathy . The only protection from this heartbreaking disease is vaccination. We know. #ANEandUs #ANEawareness www.aneinternational.org
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ANE International @aneinternational.bsky.social · 18/02/2025
#AcuteNecrotizingEncephalopathy occurs following a viral infection such as #influenza & can sometimes be fatal. In children with severe ANE, seizures may occur & there may be a rapid progression to a comatose state within 24–72 hours from the onset of symptoms. aneinternational.org
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Nathalie J Arhel @arhelnathalie.bsky.social · 16/02/2025
Thank you to Jesse's family for sharing their story 💔. You can support an international ANE families-doctors meeting happening this April, here: fondsguilhem.fr/projet/souti...
fondsguilhem.fr
Soutien à l'organisation d'une rencontre de patients atteints d'ANE1 - fonds guilhem
En avril prochain, cet événement aura pour but de promouvoir un partage d’expériences et d'apporter un soutien grâce à la rencontre entre familles, chercheurs et médecins autour de l'ANE1.
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ANE International @aneinternational.bsky.social · 16/02/2025
#AcuteNecrotizingEncephalopathy. The worst complication of #influenza you can ever imagine. Jesse's family share their story. aneinternational.org/jesse-3/
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ANE International @aneinternational.bsky.social · 15/02/2025
#AcuteNecrotizingEncephalopathy
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ANE International @aneinternational.bsky.social · 14/02/2025
#AcuteNecrotizingEncephalopathy #influenza Neurologic Complications of Flu in Kids May Be Up This Year www.medpagetoday.com/special-repo...
medpagetoday.com
Neurologic Complications of Flu in Kids May Be Up This Year
Experts are talking about a potential small increase in a very rare condition
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ANE International @aneinternational.bsky.social · 10/02/2025
Acute Necrotizing Encephalopathy
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