Explore

@mgnews.bsky.social Sep 28, 2026, 3:44 PM

For columnist Shawna Barnes, myasthenia gravis (MG) disease progression is like waking up every day in a body that feels less like your own.

#MyastheniaGravis #RareDisease #MG #MyastheniaGravisNews #Bionews

@franmartinezgr.bsky.social Sep 28, 2026, 3:16 PM

Monoallelic variants in BRSK1 are associated with a neurodevelopmental disorder with or without epilepsy #RareDisease #Genetics #morbidgene www.cell.com/ajhg/abstrac...

@mgnews.bsky.social Sep 28, 2026, 3:06 PM

Take pride in how far you’ve come: even if the road is still long. 🛤 #RareDisease

@lumanity.bsky.social Sep 28, 2026, 3:02 PM

Every voice in rare disease carries a story—and every story has the power to change things. Watch the full Voices of Rare Disease series: lumanity.com/perspectives...

#RareDisease #PatientVoice #VoicesOfRareDisease

Real voices. Real impact. Rare disease, seen clearly. Advocates. Patients. Community builders. Four extraordinary people driving change across rare disease.

@rarectadvocate.com Sep 28, 2026, 2:00 PM

Schnitzler Syndrome is a rare adult-onset autoinflammatory disease causing a chronic non-itchy hive-like rash, recurring fevers, and bone pain. IL-1 blockers can bring rapid relief.

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

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

Info card for Schnitzler Syndrome, a rare acquired autoinflammatory disease that causes a chronic hive-like rash together with an abnormal IgM protein in the blood. The card notes that roughly 15 to 20 percent of patients develop a lymphoproliferative disease, and that IL-1 blocking drugs such as anakinra can control symptoms. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

@thezebraalliance.bsky.social Sep 28, 2026, 1:56 PM

"Things not to say for $500"
Waaaaay too relatable 😏🤣😂🤣

What "suggestions" do you wish people would stop suggesting? 😉 One of my favorites is, "you need to meditate." 🧘‍♀️🧘‍♂️😒😏🫠

linktr.ee/thezebraalliance #chronicillness #raredisease #chronicpain #invisibleillness #disability #EDS

@gamuts.net Sep 28, 2026, 1:01 PM

Bloom syndrome: #Radiology findings https://gamuts.net/x/8653 #RareDisease #FOAMrad #Gamuts

@zebrabande.bsky.social Sep 27, 2026, 8:57 PM

Funktioniert es ohne wenigstens etwas wissen zu #Trauma und #dis echt schwierig...

Es ist echt ein Dilemma.

#RareDisease #SelteneErkrankung #EhlersDanlosSyndrom #hEDS #SFN #SmallFiberNeuropathie #Hilfesystem #sozialsystem #Gesundheitssystem #Kptbs #Motilitätsstörung #Sfn #mcas #behinderung

@angioedemanews.bsky.social Sep 27, 2026, 6:46 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

@rarectadvocate.com Sep 27, 2026, 2:00 PM

Congenital Pulmonary Airway Malformation (CPAM): a rare birth defect where part of a lung forms as abnormal cystic tissue. Often found on prenatal ultrasound; surgery can treat it.

Learn more: clmsociety.org

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

Info card for Congenital Pulmonary Airway Malformation, or CPAM, a rare birth defect in which part of a lung develops as abnormal cystic tissue. The card notes that CPAM occurs in roughly 1 in 10,000 to 35,000 births and is often found on prenatal ultrasound. Key treatments include surgery. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

@gamuts.net Sep 27, 2026, 1:01 PM

#RareDisease: Galloway-Mowat syndrome https://gamuts.net/x/27902 #radiology #FOAMed #FOAMrad

@alsnewstoday.bsky.social Sep 26, 2026, 8:30 PM

Your effort counts, even when the outcome looks different than before.

#RareDisease

@angioedemanews.bsky.social Sep 26, 2026, 6:46 PM

Discover on-demand options for managing swelling attacks: https://bit.ly/4mCCnvR

#Angioedema #HAE #RareDisease #TreatmentOptions #HealthCare #AngioedemaNews #Bionews

@rarectadvocate.com Sep 26, 2026, 2:00 PM

Ataxia-Telangiectasia (A-T): a rare inherited disorder caused by ATM gene changes that affects the brain and immune system. Symptoms often start when toddlers learn to walk. No cure yet.

Learn more: atcp.org

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

Info card for Ataxia-Telangiectasia, also called A-T, a rare inherited disorder that affects the brain and immune system. The card notes that A-T is caused by changes in the ATM gene and that symptoms often begin in early childhood. Key symptoms include poor balance, slurred speech, and frequent infections. Footer reads: "You may be rare, but you're not alone! rarectadvocate.com"

@gamuts.net Sep 26, 2026, 1:01 PM

Auriculo-condylar syndrome: #Radiology findings https://gamuts.net/x/25953 #RareDisease #FOAMrad #Gamuts

@mgnews.bsky.social Sep 25, 2026, 8:02 PM

Join the critical discussion: https://bit.ly/4p2z01W

#MyastheniaGravis #MyastheniaGravisNews #Bionews #MGWarrior #ChronicIllness #RareDisease #Neurology #Neurologist

@hdreach.bsky.social Sep 25, 2026, 7:31 PM

Brandi is in Houston for the HSG conference! Always great to connect with others in the HD community, learn what's happening in research and care, and bring new ideas back. 💙

#HDReach #ReachForHope #ReachingForHope #curehd #curejhd #raredisease #huntingtonsdisease #hd #jhd #huntingtons

@franmartinezgr.bsky.social Sep 25, 2026, 6:37 PM

LRP12 CGG Repeat Expansions in Patients With Adult-Onset Non-5q Spinal Muscular Atrophy #RareDisease #Genetics www.neurology.org/doi/10.1212/...

@angioedemanews.bsky.social Sep 25, 2026, 5:38 PM

Take a closer look: https://bit.ly/4hlD5fe

Whether you're dealing with gremlins or angioedema, writing down clear instructions is crucial, says columnist Danita LaShelle Jones.

#Angioedema #RareDisease #HAE #AngioedemaNews #Bionews

@zebrabande.bsky.social Sep 25, 2026, 4:47 PM

Geht der andere unter...

Ich bin einfach sooo müde davon.

#Ehlers-DanlosSyndrom #hEDS #selteneErkrankung #Motilitätsstörung #SFN #rareDisease #NotJustSad #Kptbs #dis #dissoziativeIdentitätsstörung #gastroparese #parenteral #Palliativ #trauma #smallFiberNeuropathie