🇺🇦 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
@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.socialStay in the know—and never miss an update! https://bit.ly/3FHecMk
Sign up for the weekly newsletter, because knowledge is power, and you’re not alone!
#Angioedema #HAE #PatientSupport #Newsletter #RareDisease #AngioedemaNews #Bionews
@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
@franmartinezgr.bsky.socialBiallelic PIGB Variants Cause Motor Neuropathy with Conduction Blocks and Peripheral Nerve Hyperexcitability #RareDisease #Genetics #NewPhenotype #morbidgene onlinelibrary.wiley.com/doi/10.1002/...
@teamtelomere.bsky.socialPlease join us in congratulating Katie Stevens, now CEO | Strategic Partnerships at Team Telomere!
Under her leadership, our patient-led community is helping shape TBD research and clinical trials from the ground up. Congratulations, Katie! #TelomereBiologyDisorders #RareDisease
@mgnews.bsky.socialGet the scoop: https://bit.ly/4rLsUWe
For people with neuromuscular diseases at MDA Engage: Chicago, the biggest takeaway was realizing they are not alone.
#MyastheniaGravis #RareDisease #MG #MyastheniaGravisNews #Bionews
@rarectadvocate.comAnti-GBM Disease (Goodpasture Syndrome) is a rare autoimmune disease where antibodies attack the kidneys and lungs, causing rapid kidney damage and lung bleeding within days to weeks.
Learn more: https://dub.sh/anti-gbm
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
@gamuts.netArterial tortuosity syndrome: Imaging findings https://gamuts.net/x/29200 #radiology #RareDisease #FOAMed
@moltherapy.bsky.socialRegistration is now open for the next Molecular Therapy Presents webinar, Beyond prevalence: How rare diseases are shaping therapeutic innovation. Learn more and register here today: http://dlvr.it/TVlH1Z
@achronicvoice.com"The findings add to growing evidence implicating tumor necrosis factor (TNF)-mediated #inflammation in [ #AntiphospholipidSyndrome ]-related #pregnancy complications.": buff.ly/xwv1LIc
#BloodClots #WomensHealth #obstetrics #gynecology #RareDisease #TNF #MedSky
@pscsupport.bsky.socialPSC affects everyone differently. Some people remain stable for years, others experience progressive liver scarring or face serious complications such as cancer. Dr Ghada Nouairia breaks down results from her study: buff.ly/vK12JRP
#LetsBeatPSC #PSCResearch #LiverDisease #RareDisease #PSC
@mgnews.bsky.socialYour courage paves the way for others to find their strength. 🛤 #RareDisease
@mgnews.bsky.socialFinding an MG-friendly stay: https://bit.ly/4s5SwMV
#RareDisease #Disability #Accommodation #MyastheniaGravisNews #Bionews
@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
@angioedemanews.bsky.socialExplore the details: https://bit.ly/4e2ZKfl
A preventive treatment shown in trials to reduce hereditary angioedema swelling attacks is now approved for use in Canada by people with HAE.
@mgnews.bsky.socialDiscover more: https://bit.ly/4xU2AKQ
Columnist Sarah Bendiff can sense a myashtenia gravis flare-up before one happens and knows that living with the disease means being prepared.
#MyastheniaGravis #RareDisease #MG #MyastheniaGravisNews #Bionews
@angioedemanews.bsky.socialDiscover more: https://bit.ly/3W0Sfzn
Hereditary angioedema should be considered in children with recurrent severe abdominal pain and vomiting, the case of a young boy shows.
@mgnews.bsky.socialTake a closer look: https://bit.ly/4hVRGQ2
Cemdisiran lowered hospitalization rates and reduced the number of myasthenic crises for gMG patients, a global clinical trial showed.
#MyastheniaGravis #RareDisease #MG #MyastheniaGravisNews #Bionews
@thethrivingspoonie.comParental Anxiety is almost inevitable when your child has a #raredisease — but it can quietly shape how safe your child feels in their own body. This guest post on Life's a Polyp offers practical, realistic tools for noticing and managing that anxiety.