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@angioedemanews.bsky.socialSep 11, 2026, 2:03 PM

#HereditaryAngioedema #HAE #HAEWarrior #ChronicIllness #ChronicIllnessCommunity #RareDisease #RareDiseaseAwareness #InvisibleIllness #ChronicLife #ChronicIllnessSupport #Spoonie #BioNews #AngioedemaNews

@rarectadvocate.comSep 11, 2026, 2:00 PM

Membranoproliferative Glomerulonephritis (MPGN) is a rare kidney disease where immune complexes or complement dysregulation damage the kidney's filtering units, can lead to kidney failure.

Learn more: https://dub.sh/MPGN

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness

Info card for Membranoproliferative Glomerulonephritis, a rare kidney disorder in which immune complexes or complement system dysregulation damage the kidney's filtering units. The card notes primary MPGN affects about 1 to 2 people per million and can cause foamy urine, swelling, and high blood pressure. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@nordrare.bsky.socialSep 11, 2026, 1:16 PM

Leaders from the NORD #RareDisease Centers of Excellence will take the stage at October's #NORDSummit to share how they're tackling the field’s most pressing challenges: shortening time to diagnosis, improving coordinated care and advancing innovative research. Learn more & join us at nordsummit.org

October 25-27, Washington, D.C. Rare Disease Centers of Excellence in Action: Advancing Diagnosis, Care, and Research. Speakers: Dr. Beth Kozel of Nationwide Children's Hospital, Dr. John Morren of Cleveland Clinic, Dr. Natasha Shur of Children's National Hospital, and moderator Marybeth McAfee of NORD.
@nordrare.bsky.socialSep 11, 2026, 1:13 PM

Catch #NORD CEO Pam Gavin discussing the future of #AI in biomedicine for rare diseases at this @nationalconsumers.bsky.social event on Sept. 24!

Let's make AI work for #RareDisease patients.

@gamuts.netSep 11, 2026, 1:01 PM

Auriculo-condylar syndrome https://gamuts.net/x/25953 #RareDisease #MedEd #FOAMrad

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@mgnews.bsky.socialSep 11, 2026, 12:11 AM

Take a closer look: https://bit.ly/3SYMa5p

Vyvgart is safe and effective in adults with generalized myasthenia gravis, regardless of antibody status, real-world data from Japan show.

#MyastheniaGravis #RareDisease #MG #MyastheniaGravisNews #Bionews

@mgnews.bsky.socialSep 10, 2026, 9:02 PM

Finding an MG-friendly stay: https://bit.ly/4s5SwMV

#RareDisease #Disability #Accommodation #MyastheniaGravisNews #Bionews

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@franmartinezgr.bsky.socialSep 10, 2026, 8:12 PM

AlphaGenome Variant Impact (AVI) score track from Google DeepMind's AlphaGenome Atlas is now available in the UCSC gemone browser!!! #RareDisease #Genetics genome.ucsc.edu/goldenPath/n...

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@mgnews.bsky.socialSep 10, 2026, 5:38 PM

Get the scoop: https://bit.ly/46OszIv

Myasthenia gravis can take control of the way you live, even when that isn't on a list of its symptoms, writes columnist Sarah Bendiff.

#MyastheniaGravis #RareDisease #MG #MyastheniaGravisNews #Bionews

@alsnewstoday.bsky.socialSep 10, 2026, 4:30 PM

Your feelings are valid and you are not alone!

Click the link to join the community: https://bit.ly/4yQajL5

#RareDisease #RareDiseaseCommunity #ChronicIllness #Disability #Bionews

@mgnews.bsky.socialSep 10, 2026, 4:24 PM

Your feelings are valid and you are not alone!

Click the link to join the community: https://bit.ly/4ytue1U

#RareDisease #RareDiseaseCommunity #ChronicIllness #Disability #Bionews

@nf2biosolutionsuk.bsky.socialSep 10, 2026, 2:01 PM

Join CamRARE on Wednesday 7 October for a packed programme of talks, panels and interactive workshops at #RAREsummit26 - exploring policy, care, health data, partnerships and innovation.
📍 In person or online
🎟️ Programme & tickets: www.camraredisease.org/raresummit26...
#RAREsummit26 #RareDisease

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@rarectadvocate.comSep 10, 2026, 2:00 PM

Chagas Disease is a parasitic infection spread by kissing bugs that can silently damage the heart and digestive tract over decades if left untreated. Considered rare in US/Europe, not worldwide.

Learn more: chagasfound.org

You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness

Info card for Chagas Disease, a parasitic infection caused by Trypanosoma cruzi and spread mainly by triatomine kissing bugs. The card notes that it is considered rare in the US and Europe, but not worldwide. it affects about 8 million people worldwide and can lead to serious heart and digestive complications if untreated. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@gamuts.netSep 10, 2026, 1:01 PM

#RareDisease: Intellectual deficit, X-linked - dysmorphism - cerebral atrophy https://gamuts.net/x/34632 #radiology #FOAMed #FOAMrad

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@thesumairafdn.bsky.socialSep 10, 2026, 12:35 PM

💰 #Raredisease can bring added financial challenges.

Join our 3-part Financial Health workshop for practical tools to set goals, budget & build savings—even with limited resources.

Sept. 28 | 3pm PT/6pm ET events.chase.com/ereg/newreg....

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@francesleckie.bsky.socialSep 10, 2026, 12:01 PM

This week's IL newsletter: Muscular Dystrophy UK is investing £1.5m in 10 new research projects, taking its current research commitment to more than £10m.

buff.ly/AAC6hVg
#MuscularDystrophy #RareDisease

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@pbcawareness.bsky.socialSep 10, 2026, 9:50 AM

Laughter is good for the soul. #PBCAwarenessMonth
#LiverHealth
#PrimaryBiliaryCholangitis
#raredisease
#PBCDay2026

@pbcawareness.bsky.socialSep 10, 2026, 9:30 AM

YOU MAY HAVE NEVER HEARD OF #PBC… but someone is living with it every single day.

September is #PBCAwarenessMonth, and we’re making some noise for Primary Biliary Cholangitis (PBC)—a rare, chronic autoimmune liver disease.
#PrimaryBiliaryCholangitis #RareDisease #LiverHealth #PatientAdvocacy

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@erneurogen.bsky.socialSep 10, 2026, 8:14 AM

🇺🇦 Серія вебінарів з дитячої урології для України: Рідкісні урологічні камені
🗓 10 вересня
🕕 18:00 CEST / 19:00 EEST
🎙 Доктор Анна Буйонс Тур
🔗 tinyurl.com/eurogen10sep26

#EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg

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@erneurogen.bsky.socialSep 10, 2026, 8:14 AM

🇺🇦 Paediatric Urology Webinar Series for Ukraine: Rare Urological Stones
🗓 10 September
⏰ 18:00 CEST / 19:00 EEST
🎙 Dr. Anna Bujons Tur
🔗 tinyurl.com/eurogen10sep26

#EUfunded #EU4Health #HealthUnion #RareDisease #ERNs #PedUro #SoMe4PedSurg

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