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@achronicvoice.comOct 10, 2026, 9:30 PM

"I’ve often been asked #ignorant #questions. I have a very expressive face so I have to work hard to keep that in check, but people make it very difficult to remain neutral sometimes.": buff.ly/fIFTt1L

Featuring: roysamuelgeorge
#communication #ChronicIllness #NEisVoid #disability #RareDisease

“It’s in My Blood”: Roy George — A Dramatic Life with a Short Bowel. Read on: A Chronic Voice .com
@alsnewstoday.bsky.socialOct 10, 2026, 8:30 PM

Purpose isn’t found, but rather revealed through the life we live 

#RareDisease

@franmartinezgr.bsky.socialOct 10, 2026, 6:13 PM

SpliceAI2: The Next Generation of Splicing and Transcript Isoform Prediction #RareDisease #Genetics www.illumina.com/science/geno...

@erneurogen.bsky.socialOct 10, 2026, 3:01 PM

Rare disease care must include psychological support. We will use these results to inform our guidelines and training, and to help our centres of expertise connect patients with mental health professionals.

Full results: tinyurl.com/eurogenmenta...

#RareDisease #ERNs #EUfunded

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

Nemaline Myopathy 2 (NEM2) is a rare inherited muscle disease caused by NEB gene changes. Rod-like structures form in muscle cells, weakening the face, neck, limbs, and breathing muscles.

Learn more: buildingstrength.org

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

Info card for Nemaline Myopathy 2 (NEM2), a rare inherited muscle disease caused by changes in the NEB gene, which makes the muscle protein nebulin. The card notes that nemaline myopathy affects about 1 in 50,000 people and that NEB variants cause about half of all cases. Key symptoms include weakness of the face, neck, and trunk, breathing problems, and difficulty swallowing. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@mgnews.bsky.socialOct 9, 2026, 11:15 PM

Leave a ❤️‍🔥 in the comments if you have a love-hate relationship with doctors. #RareDisease

@curegm1.bsky.socialOct 9, 2026, 10:01 PM

Attended the International GM1 Community Conference? Your feedback shapes our future! Take our 5-min survey via QR code or link in bio. Help us improve future events & resources! 🗣️💚 #CureGM1 #GM1Gangliosidosis #RareDisease

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@cilialab.bsky.socialOct 9, 2026, 8:39 PM

Big triumphs for little images…. #InMicroscopyWeTrust #CiliaGate #NikonSWiM2026 @nytimes.com but the #RareDisease at the epicentre of all this #PCD still swept up in misinformation. How about a piece on why #MicroscopyMatters for these patients, people behind the bylines?

@mgnews.bsky.socialOct 9, 2026, 8:03 PM

Start your own reply: https://bit.ly/440DaPx

#MyastheniaGravis #MyastheniaGravisNews #Bionews #MGWarrior #ChronicIllness #RareDisease

@rarectadvocate.comOct 9, 2026, 2:00 PM

Hereditary Spastic Paraplegia (HSP) is a group of rare inherited disorders where long nerve fibers to the legs slowly degenerate, causing progressive leg stiffness, weakness, & trouble walking.

Learn more: sp-foundation.org

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

Info card for Hereditary Spastic Paraplegia (HSP), a group of rare inherited disorders in which the nerve fibers that carry movement signals to the legs slowly degenerate. The card notes that more than 80 genes have been linked to the condition and that the most common type, SPG4, is caused by variants in the SPAST gene. Key symptoms include progressive leg stiffness, weakness, and bladder urgency. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@gamuts.netOct 9, 2026, 1:01 PM

Craniosynostosis - dysmorphism - brachydactyly https://gamuts.net/x/34218 #RareDisease #MedEd #FOAMrad

@curegm1.bsky.socialOct 8, 2026, 8:01 PM

Milo, 21 months, died of infantile GM1 gangliosidosis on July 20, 2026. GM1 took his movement & sight, but he smiled & knew his parents' voices. His mom shared his story so we remember the joy he brought. Read it at curegm1.org/milos-story (link in bio). #GM1 #RareDisease

Milo died of infantile GM1 gangliosidosis on JulyMilo died of infantile GM1 gangliosidosis on JulyMilo died of infantile GM1 gangliosidosis on July
@angioedemanews.bsky.socialOct 8, 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

@mgnews.bsky.socialOct 8, 2026, 5:38 PM

Explore the details: https://bit.ly/47JRPA6

Columnist Sarah Bendiff acknowledges that having to think so much about the reality of her MG diagnosis changed her, and her personality.

#MyastheniaGravis #RareDisease #MG #MyastheniaGravisNews #Bionews

@mgnews.bsky.socialOct 8, 2026, 4:17 PM

Yes, I really do need to be here. ♿

Disability doesn’t have an age. 💙

For more real-life stories and the latest on your community, subscribe to our newsletter: https://bit.ly/4hILCsU

#Bionews #ChronicDisease #RareDisease #ChronicIllness #DisabilityAwareness

@angioedemanews.bsky.socialOct 8, 2026, 3:45 PM

Discover more: https://bit.ly/4hOw7zF

A real-world analysis found preventive treatment helped some HAE patients go a year without treated attacks, but most needed on-demand meds.

#Angioedema #RareDisease #HAE #AngioedemaNews #Bionews

@mgnews.bsky.socialOct 8, 2026, 3:44 PM

Discover more: https://bit.ly/4hB5xLx

The experimental CAR T-cell therapy rese-cell may safely ease symptoms in adults with generalized myasthenia gravis, according to trial data.

#MyastheniaGravis #RareDisease #MG #MyastheniaGravisNews #Bionews

@franmartinezgr.bsky.socialOct 8, 2026, 2:21 PM

A Homozygous ALCAM–CBLB Deletion at 3q13.11-q13.12 Defines a Candidate Novel Oculo-Skeletal-Immune Contiguous Gene Deletion Syndrome #RareDisease #Genetics #morbidgene onlinelibrary.wiley.com/doi/10.1111/...

@rarectadvocate.comOct 8, 2026, 2:00 PM

GM3 synthase deficiency is a rare inherited disorder that stops the body from making a fat the brain needs, causing severe infant epilepsy, hearing and vision loss, and developmental delays

Learn more https://www.cdgcare.org

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

Info card for GM3 Synthase Deficiency, a rare inherited disorder in which the body cannot make GM3, a fatty molecule the brain needs. The card notes that the condition is caused by variants in the ST3GAL5 gene and affects about 1 in 1,200 births among the Old Order Amish. Key symptoms include infant-onset seizures, hearing and vision loss, and severe developmental delays. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"
@gamuts.netOct 8, 2026, 1:01 PM

Frontonasal dysplasia: Imaging findings https://gamuts.net/x/6698 #radiology #RareDisease #FOAMed

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