A person with long hair and glasses is seated in a chair, wearing a black top. Next to them is a speech bubble containing text about their experience with SMA type 2 and referencing their older sibling with Lennox-Gastaut syndrome. The words "Seda Karakaya," "linguist and graphic designer who has SMA type 2," and "SMACongress2026" are visible. At the bottom, "Rare Disease Advisor" is displayed with a logo.

#SMACongress2026: Seda Karakaya, 29, from the Turkish city of Kayseri. Karakaya, a linguist and graphic designer, has SMA type 2. She spoke Mar. 13, 2026, at the 5th International Scientific Congress on SMA (@sma-europe.bsky.social) in Budapest, Hungary.

#RareDisease #SpinalMuscularAtrophy #SMA

A person smiles in a busy indoor environment. A large quote beside them reads, "His top wish is to attend school. He understands that bullying would be part of the experience. He wants to be scolded by the teacher and sent to detention. He just wants to be a normal kid." The text identifies the speaker as Sook Yee Yip, mother of 16-year-old Branden Lim, who has SMA type 1. The image includes the Rare Disease Advisor logo and hashtag #SMACongress2026.

#SMACongress2026: Sook Yee Yip of Kuala Lumpur, Malaysia, and mother of 16-year-old Branden Lim, who has SMA type 1. She spoke March 13, 2026, at the 5th International Scientific Congress on SMA (@sma-europe.bsky.social) in Budapest, Hungary.

#RareDisease #SpinalMuscularAtrophy #SMA

A person with short hair and glasses is smiling, overlaid with a quotation about spinal muscular atrophy treatment progress in Europe compared to the U.S. The quote is in a blue and white color scheme. Text includes the name "Kathryn Swoboda, MD, Neurologist and Rare Disease Specialist." The image features branding for Rare Disease Advisor and a hashtag #SMACongress2026.

#SMACongress2026: Kathryn Swoboda, MD, an American neurologist and rare disease specialist who’s been working on #SMA for nearly 30 years, speaking Mar. 13, 2026, at the 5th International Scientific Congress on SMA @sma-europe.bsky.social in Budapest, Hungary.

#RareDisease #SpinalMuscularAtrophy

Read about SMA and cancer in families—join our supportive space for sharing: https://bit.ly/3UMtiUD

#SMA #SMACommunity #RareDisease #SpinalMuscularAtrophy #SMANewsToday #Bionews

Looking forward to continued collaboration and progress in SMA research. Together, we shine! 🌟

Huge thanks to @sma-europe.bsky.social for the amazing congress!

#SMAcongress2026 #SpinalMuscularAtrophy

Learn how SMA is diagnosed and hear others’ diagnostic journeys: https://bit.ly/45McKlU

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

See how whole-body vibration therapy can support SMA strength: https://bit.ly/4oyBg1h

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

Explore equipment that makes daily life with SMA easier and safer: https://bit.ly/4oB1Kiy

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

Find ways to manage SMA sleep challenges for better nights ahead: https://bit.ly/4mGERIW

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

ARRCT | Open Access
Treatment expectations and meaningful outcomes in spinal muscular atrophy explored using the Goal Attainment Scale.

🔗 www.archives-rrct.org/article/S2590-1095(26)00...

#ARRCT #OpenAccess #SpinalMuscularAtrophy #PatientCenteredCare #OutcomeMeasures #ACRM

Find inspiration for adaptive living with SMA—share your transformations and tips: https://bit.ly/45OsweW

#SMA #SMACommunity #RareDisease #SpinalMuscularAtrophy #SMANewsToday #Bionews

Discover SMA life expectancy insights and stories of living fully: https://bit.ly/3Ut1aWC

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

Get to know the different SMA types and connect with shared experiences: https://bit.ly/41AE3gr

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

Explore non-drug treatments bringing comfort and hope to people with SMA: https://bit.ly/45eR01W

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

Learn how SMA clinical trials work and shape the future of treatments: https://bit.ly/47rO5En

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

#SpinalMuscularAtrophy (SMA) is treated with the ASO Nusinersen (Spinraza™) to restore SMN via SMN2 splicing. 🧬 New work reveals diverse off-target effects linked to its chemistry—and shows how to mitigate them. 🚀
#NARMolecularMedicine #RNATherapeutics #ASO
🔗 Read here: doi.org/10.1093/narm...

Connect in all phases of SMA care and find mutual support—start your care journey here: https://bit.ly/45ZMjIC

#SMA #SMACommunity #RareDisease #SpinalMuscularAtrophy #SMANewsToday #Bionews

Understand spinal muscular atrophy and share knowledge with others: https://bit.ly/4fCyvIb

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

#CureSMA #spinalmuscularatrophy

Recognize SMA symptoms early and support others on the same journey: https://bit.ly/3UogDan

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

Find SMA exercise tips to help you stay strong, active, and connected: https://bit.ly/4oqyFGC

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

When Mason Stewart was diagnosed with a rare neuromuscular disorder as a toddler, his world seemed to be shrinking. Now a teenager, his future is turning out to be brighter than anyone could have imagined. #SpinalMuscularAtrophy #RareDiseases xhttps://tinyurl.com/mvmkv4n4

Read about Finkel type SMA and connect with those who understand: https://bit.ly/4mGf9Ef

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

The image is a graphic titled "Financial assistance for 25+ rare diseases." It lists diseases under categories: Autoimmune, Blood disorders, Endocrine disorders, Eye diseases, Gastrointestinal diseases, Hepatic, Metabolic, Musculoskeletal diseases, and Neurological disorders. Notable mentions include Myasthenia gravis, Myelodysplastic syndrome, Cushing's disease, Hypertrophic cardiomyopathy, and Spinal muscular atrophy. A note states that a premium fund is also available. The image has a purple gradient background.

Rare Disease Day is this Saturday, and we’re proud of the 25+ #RareDisease funds we support 🦓

We have multiple rare disease funds that are currently open—including #MyastheniaGravis, #PompeDisease, and #SpinalMuscularAtrophy.

Explore our open funds: https://bit.ly/3e5B723

#MedSky

Reveal the importance of SMA routines—share strategies that help your life: https://bit.ly/3HSrHK1

#SMA #SMACommunity #RareDisease #SpinalMuscularAtrophy #SMANewsToday #Bionews

Understand how electromyography helps in SMA diagnosis and care: https://bit.ly/4oAJead

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

Explore specialized equipment that supports daily life with SMA: https://bit.ly/45KfTmh

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

Rare Sequence Variants Can Cause False Positives in SMA Newborn Screening Although SMA newborn screening suggested a lack of SMN1 in 2 infants, both produced rare SMN isoforms that may even increase efficiency.

A report published in the @ajhgnews.bsky.social describes 2 newborns whose screening results initially suggested complete absence of #SMN1, the genetic cause of spinal muscular atrophy (#SMA).

Read here: https://bit.ly/4aNCtfj

#RareDisease #SpinalMuscularAtrophy

Find adaptive clothing ideas that make SMA life more comfortable: https://bit.ly/45uFRZI

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease

Find options and advice for treating scoliosis in SMA: https://bit.ly/4mC3FSd

#SMA #SpinalMuscularAtrophy #SMANewsToday #Bionews #RareDisease