Start your own reply: https://bit.ly/440DaPx
#MyastheniaGravis #MyastheniaGravisNews #Bionews #MGWarrior #ChronicIllness #RareDisease
@mgnews.bsky.social
@mgnews.bsky.socialStart your own reply: https://bit.ly/440DaPx
#MyastheniaGravis #MyastheniaGravisNews #Bionews #MGWarrior #ChronicIllness #RareDisease
@rarectadvocate.comHereditary 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
@gamuts.netCraniosynostosis - dysmorphism - brachydactyly https://gamuts.net/x/34218 #RareDisease #MedEd #FOAMrad
@curegm1.bsky.socialMilo, 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
@angioedemanews.bsky.socialDiscover 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.socialExplore 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.socialYes, 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.socialDiscover 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.
@mgnews.bsky.socialDiscover 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.socialA 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.comGM3 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
@gamuts.netFrontonasal dysplasia: Imaging findings https://gamuts.net/x/6698 #radiology #RareDisease #FOAMed
@proqr.bsky.socialThis #LiverAwarenessMonth, we’re raising awareness of #BiliaryAtresia (BA), a rare liver disease that affects newborns and young children.
For more information about BA, visit our website: bit.ly/3VykIN6
#RareDisease #PediatricLiverDisease #Axiomer #RNAEditing #LiverHealth
@gene2phenotype.bsky.social'GPHN-related molybdenum cofactor deficiency with epileptic encephalopathy and cranial MRI anomalies' added to DDG2P. Biallelic LoF variants in GPHN cause a disorder characterised by hypotonia, feeding difficulties and intractable seizures. See www.ebi.ac.uk/gene2phenoty... #RareDisease #morbidgene
@erneurogen.bsky.social🇺🇦 Серія вебінарів з дитячої урології для України: Аноректальні вади розвитку (Частина 1)
🗓 8 жовтня 🕕 18:00 CEST / 19:00 EEST
🎙 Проф. д-р Мартін Лахер
🔗 Реєстрація tinyurl.com/eurogen08oct26
@erneurogen.bsky.social🇺🇦 Paediatric Urology Webinar Series for Ukraine: Anorectal Malformations (Part 1)
🗓 8 October ⏰ 18:00 CEST / 19:00 EEST
🎙 Prof. Dr. Martin Lacher
🔗 Register: tinyurl.com/eurogen08oct26
@angioedemanews.bsky.socialYour 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
@mgnews.bsky.socialFinding balance between activity and rest is key. How do you know when to pause? #RareDisease
@lipodystrophyunite.bsky.socialIf you already have very little fat in some areas, what happens when you take a GLP-1 medication?
In this clip, the panel explains that fat loss comes from areas where fat is present—and that weight loss can also include muscle.
#Lipodystrophy #LipodystrophyUnited #GLP1 #RareDisease
@angioedemanews.bsky.socialTake 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
