🇺🇦 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
@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
@nmd4c.caWe are happy to announce that applications for the 2027 NMD4C–RARE.Qc Basic Science Research Summer School are now open! buff.ly/626ISyj
Deadline: Dec 1, 2026
Program Dates: May 12-14, 2027
For Graduate students, postdocs & #neuromuscular #raredisease junior research staff in Canadian institutions
@mgnews.bsky.socialDiscover more: https://bit.ly/4zbykvW
Columnist Mark Harrington adds a humorous twist to the times when he's seeing double due to myasthenia gravis.
#MyastheniaGravis #RareDisease #MG #MyastheniaGravisNews #Bionews
@angioedemanews.bsky.socialTake a closer look: https://bit.ly/471TqB9
As columnist Natalie Sirota awaits the FDA's decision on a gene-editing therapy for HAE, she feels both excited and concerned.
@mgnews.bsky.socialExplore the details: https://bit.ly/4hRvYeT
Nearly a year of treatment with telitacicept was associated with deep and durable gMG symptom relief, trial data showed.
#MyastheniaGravis #RareDisease #MG #MyastheniaGravisNews #Bionews
@angioedemanews.bsky.socialAntihistamines don’t always keep these symptoms in check, so new options matter.
#HAE #HereditaryAngioedema #ChronicSpontaneousUrticaria #Angioedema #Hives #Urticaria #ClinicalTrials #HAEAwareness #RareDisease #ChronicIllnessCommunity #InvisibleIllness #PatientAdvocacy #BioNews #AngioedemaNews
@fortrea.bsky.socialChina's #RareDisease ecosystem is evolving, helping improve patient identification and engagement. Learn how these developments could shape the future of rare disease clinical research: https://www.fortrea.com/insights/china-rare-disease-patient-recruitment-opportunity
#ClinicalTrials #APAC
@rarectadvocate.comHyperprolinemia Type II is a rare inherited disorder where the body can't break down proline. A toxic byproduct inactivates vitamin B6, which can trigger seizures in childhood.
Learn more: https://dub.sh/HP-II
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
@gamuts.netHyperuricemia - anemia - renal failure: #Radiology findings https://gamuts.net/x/35122 #RareDisease #FOAMrad #Gamuts
@nfbot.bsky.social#JAACAP #metaanalysis finds children with #neurofibromatosis type 1 have more severe #ADHD symptoms than the general population. #FSUCOM #raredisease #EndNF https://twp.ai/4iwvk8
@eara.euDiagnosis of #patients with a #RareDisease using #flies and #AI
#AI flagged a rare BRSK1 #gene alteration missed by standard analysis. Studies in #FruitFlies showed the #gene is involved in communication between #neurones.
Learn more: 🔗 www.eara.eu/news/diagnos...
#BaylorCollegeOfMedicine
@zebrabande.bsky.socialEinfach ein wenig besser in der "vogel-Strauß Taktik" wäre...
Ich weiß rational,
Dass es gut ist, dass dem nicht so ist...
Aber...
#EhlersDanlosSyndrom #hEDS #SelteneErkrankung #rareDisease #dis #dissoziativeIdentitätsstörung #Kptbs #trauma #punktehund
@sinaigenhealth.bsky.social🔗 Learn more about SSIEM 2026:
www.ssiem2026.org
🏛️ Society for the Study of Inborn Errors of Metabolism (SSIEM):
www.ssiem.org
#SSIEM2026 #RareDisease #Genomics #MachineLearning #NaturalLanguageProcessing #GenomicMedicine
@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
@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
