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@angioedemanews.bsky.socialOct 5, 2026, 6:46 PM

Discover how to navigate intimacy and angioedema: https://bit.ly/43DYuLc

Your condition doesn’t define your worth—take charge of your sexual and emotional well-being, one step at a time. 

#Angioedema #SexualHealth #ChronicIllness #PatientSupport #RareDisease #AngioedemaNews #Bionews

@patient-advocates.bsky.socialOct 5, 2026, 5:17 PM

Support is just a click away with our National Financial Resource Directory! It's designed to help you connect with organizations dedicated to improving access to quality #healthcare and reducing medical costs. Start your search today: https://bit.ly/3QuaL0q

#ChronicIllness #RareDisease #OncSky

A person is sitting on a couch using a laptop, browsing the National Financial Resource Directory website. The page displayed features search options and a blue and white color scheme.
@laurenctesta.bsky.socialOct 5, 2026, 4:40 PM

#MarfanSyndrome #AortaEd #connectivetissue #RareDisease

@angioedemanews.bsky.socialOct 5, 2026, 3:45 PM

Get the scoop: https://bit.ly/4dWHggD

The experimental therapy barzolvolimab can reduce itching and hives in people with CSU who experience angioedema, trial data showed.

#Angioedema #RareDisease #HAE #AngioedemaNews #Bionews

@rarectadvocate.comOct 5, 2026, 2:00 PM

Spastic Tetraplegia, Thin Corpus Callosum, and Progressive Microcephaly (SPATCCM) is an inherited neurodevelopmental disorder caused by changes in the SLC1A4 gene.

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

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

Info card for Spastic Tetraplegia, Thin Corpus Callosum, and Progressive Microcephaly (SPATCCM), an ultra-rare brain disorder caused by changes in the SLC1A4 gene, which supplies the brain with serine. The card notes that fewer than 1 in 1,000,000 people are affected and that it was first described in 2015. Key symptoms include slowing head growth after birth, stiffness in all four limbs, and seizures. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@angioedemanews.bsky.socialOct 4, 2026, 11:31 PM

Your mental health matters: https://bit.ly/4jEt387

Self-care, mindfulness, support groups, and therapy can all help you cope 💙

#HereditaryAngioedema #HAEAwareness #MentalHealthMatters #ChronicIllness #RareDisease #PatientSupport #AngioedemaNewsToday #Bionews

@jimd-editors.bsky.socialOct 4, 2026, 6:05 PM

📢 New in #JIMD

The first international consensus guidelines for pyruvate dehydrogenase complex deficiency (PDCD) bring together 199 recommendations covering diagnosis, treatment, ketogenic diet, emergency care, surveillance & transition.

📄 doi.org/10.1002/jimd...

#PDCD #MitoDisease #RareDisease

@rarectadvocate.comOct 4, 2026, 2:00 PM

Sorsby Fundus Dystrophy is a rare inherited retinal disease caused by TIMP3 mutations. It resembles macular degeneration but typically starts decades earlier, in a person's 30s to 50s.

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

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

Info card for Sorsby Fundus Dystrophy, a rare inherited retinal disease caused by mutations in the TIMP3 gene that leads to abnormal blood vessel growth beneath the retina. The card notes that symptoms often begin in a person's 30s to 50s and that anti-VEGF injections can help preserve vision. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@gamuts.netOct 4, 2026, 1:01 PM

#RareDisease: Neurenteric cyst https://gamuts.net/x/28865 #radiology #FOAMed #FOAMrad

@jimd-editors.bsky.socialOct 4, 2026, 5:15 AM

New Shortcast

What does inherited neurometabolic disease look like in adulthood?

Boel Ernerdahl discusses 59 adults with 32 different disorders — revealing remarkably diverse treatment, functional & social needs.

🎧 Listen here⁠: open.spotify.com/episode/6Lfq...
#JIMDPodcast #RareDisease

@angioedemanews.bsky.socialOct 3, 2026, 11:31 PM

Take a moment today to recognize your progress: https://bit.ly/4kUuC33

It’s easy to get caught up in “what ifs” about the future, but don’t forget to celebrate how far you’ve come.

#Angioedema #HAE #ChronicIllness #CaregiverLife #ProgressNotPerfection #RareDisease #AngioedemaNews #Bionews

@mgnews.bsky.socialOct 3, 2026, 11:15 PM

Healing begins when you acknowledge your strength and your struggle: honor both. 🕯 #RareDisease

@curegm1.bsky.socialOct 3, 2026, 8:00 PM

There are so many moving parts to planning our conference, even if it was a virtual event this year. We are so thankful to our sponsors and the entire community for making this event possible. THANK YOU! #curegm1 #raredisease #community

There are so many moving parts to planning
@franmartinezgr.bsky.socialOct 3, 2026, 5:46 PM

Loss of function variants in ADAMTS6: a new connective tissue disorder with heart defect, aortic aneurysm and neurodevelopmental features #RareDisease #Genetics #morbidgene www.sciencedirect.com/science/arti...

@apainprincess.bsky.socialOct 3, 2026, 2:23 PM

“I also feel sad, like I am trapped on a train and can only look through the window while my friends can hop off later and enjoy the landscape. And I will live on this train. I have no choice.” How Do You Do It? https://buff.ly/V63H5HV #ChronicPain #RareDisease #Disabilities

@rarectadvocate.comOct 3, 2026, 2:00 PM

Pyoderma Gangrenosum is a rare skin disorder causing painful ulcers that are not caused by infection. About half of cases occur alongside inflammatory bowel disease or arthritis.

Learn more: https://www.allthingspg.org

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

Info card for Pyoderma Gangrenosum, a rare inflammatory skin disorder that causes small red bumps to erode into painful, rapidly expanding open sores. The card notes that about half of cases occur alongside another condition such as inflammatory bowel disease, and that treatment often includes corticosteroids or biologic medications. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@gamuts.netOct 3, 2026, 1:01 PM

#RareDisease: Saldino-Mainzer syndrome https://gamuts.net/x/19246 #radiology #FOAMed #FOAMrad

@pscsupport.bsky.socialOct 3, 2026, 7:45 AM

Clinical definitions do not always capture the daily reality of living with #PSC.
The International #PSCTreatment Evidence Survey gathers true real-world lived experiences to build accurate clinical guidance.
Help bridge the knowledge gap: buff.ly/xF4UJEX
#LetsBeatPSC #RareDisease

@drjudystone.bsky.socialOct 3, 2026, 1:57 AM

The Family That Beat a Rare, Incurable Disease - The Atavist Magazine apple.news/A0jQ37HOHT7G... #RareDisease #DrugDevelopment

@mgnews.bsky.socialOct 2, 2026, 8:02 PM

Add your voice today: https://bit.ly/47KWQIa

#MyastheniaGravis #MyastheniaGravisNews #Bionews #MGWarrior #ChronicIllness #RareDisease #PinsAndNeedles #Spasms #Twitching