Budapest reunion! 🥳🤩At the Global SMAdvocacy Event, 70 patient advocates from over 40 countries around the world joined forces and strategised towards a better world for people living with SMA.
Thank you ALL who joined! 💜
All together. One goal.
#WeAreOne #smacongress2026 #smaawareness
🏆 Scotland has become the first country in the UK to roll out newborn screening for Spinal Muscular Atrophy (SMA) — a major step forward in early diagnosis and treatment.
#CIL #cilmkt #ukisotope #NewbornScreening #SMA #SMAUK #SpinalMuscularAtrophy #SMAAwareness #HealthcareInnovation #Diagnostics
A blue slide announcing “New White Paper Update – Spanish Translation.” The “All Together. One Goal.” stamp appears below the headline. SMA Europe's 20 Years Together logo is positioned in the top left corner, with the NBSA logo displayed to the right.
A blue colour slide featuring the SMA Europe logo, #WeAreOne and #SpinalMuscularAtrophy hashtags, and the SMA Europe website link: www.sma-europe.eu.
📢 The SMA Newborn Screening Alliance is excited to share that the updated White Paper on Newborn Screening for SMA is now available in Spanish. You can access it here: https://www.sma-screening-alliance.org/resources
We extend our sincere thanks to @FUNDAME.
#SMAAwareness #NewbornScreening #SMA
As 2025 comes to a close, we thank our SMA community for a year of progress, unity, and resilience. Thank you for your dedication and support. ✨ Wishing everyone a brighter, stronger, and more hopeful 2026. Together, #WeAreOne
#OneGoal #SMA #SMAAwareness #HappyHolidays #HappyNewYear #2026
A mint-colour slide with black text reads “Thank You for Celebrating 5 Years of the SMA Newborn Screening Alliance With Us” The white world icon is under the text. The SMA Europe logo appears in the top right corner and NBSA 5 Years Anniversary stamp on the left.
A mint-colour slide featuring the SMA Europe logo, #WeAreOne and #SpinalMuscularAtrophy hashtags, and the SMA Europe website link: www.sma-europe.eu.
Thank you for joining our anniversary webinar! We’re grateful to all who celebrated 5 years of the SMA Newborn Screening Alliance with us, and to our incredible speakers for their insights and inspiration. Together, #weareone
#nbsa #smaawareness
📣 Celebrating 5 years of the SMA Newborn Screening Alliance!
Early identification in SMA can mean the difference between muscle loss and a stronger start to life. Every child deserves timely diagnosis and treatment.
Learn more: https://www.sma-screening-alliance.org
#NBSA #SMAAwareness #WeAreOne
We are very excited to share the article about our 2025 Awareness Campaign, "Connecting the Dots" written by Jacob Harney for SMA News Today. smanewstoday.com/news/sma-awareness-campa... #weareone #spinalmuscularatrophy #smaawareness #smaresearch
Thank you all who watched and engaged in our campaign! If you want to keep in touch, you can subscribe to our monthly newsletter here: https://www.sma-europe.eu/ And if you want to support the research projects we fund, you can click here: https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness
SMA Awareness Month = celebrating strength & pushing for progress 💜
Read how families + advocates are raising awareness & supporting research via @cbsaustin 📰
👉 cbsaustin.com/features/we-...
#SMAAwareness #DisabilityCommunity
August is Spinal Muscular Atrophy Awareness Month. 🦋
We honor SMA warriors, caregivers, & advocates—and work toward more awareness, research, and hope. 💜
#SMAAwareness #DisabilityAwareness #RareDisease
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Jakub, the patient expert, and Sorana, the researcher: "Investigating Calcium-induced mitochondrial dysfunction in zebrafish and iPSC models of SMA." https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness #ConnectingTheDots
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Jakub, the patient expert, and Sorana, the researcher: "Investigating Calcium-induced mitochondrial dysfunction in zebrafish and iPSC models of SMA." https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness #ConnectingTheDots
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Seda, the patient expert, and Gabrielle, the researcher: "Leveraging SMN role in translation to develop the next-gen of biomarkers for SMA." https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness #ConnectingTheDots
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Seda, the patient expert, and Gabrielle, the researcher: "Leveraging SMN role in translation to develop the next-gen of biomarkers for SMA." https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness #ConnectingTheDots
🔬This SMA Awareness Month, we are Connecting the Dots! Listen to Christian, the patient expert, and Nathalie, the researcher: "Skeletal Muscle Stem Cells as untapped therapeutic targets for SMA long-term treatment (SATSMA)." https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness #ConnectingTheDots
🔬This SMA Awareness Month, we are Connecting the Dots! Listen to Christian, the patient expert, and Nathalie, the researcher: "Skeletal Muscle Stem Cells as untapped therapeutic targets for SMA long-term treatment (SATSMA)." https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness #ConnectingTheDots
This month is for Spinal Muscular Atrophy Awareness. It's time to increase understanding, support research, and stand with those living with SMA.
We are committed to individualized care for residents with complex needs, ensuring quality of life.
#SMAAwareness #InclusiveCare #BrooklynCares
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Simona, the patient expert, and Simon, the researcher: "Are microvascular defects relevant in Spinal Muscular Atrophy?: Characterisation of the mouse model." youtu.be/o1R5h3j1lLE #SMAAwareness #ConnectingTheDots
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Simona, the patient expert, and Simon, the researcher: "Are microvascular defects relevant in Spinal Muscular Atrophy?: Characterisation of the mouse model." youtube.com/shorts/R85PI... #SMAAwareness #ConnectingTheDots
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Christiana, the patient expert, and Morgan, the researcher: "Deciphering the Molecular Landscape of Neuromuscular Development in Spinal Muscular Atrophy." 🔗 https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness #ConnectingTheDots
🔬 This SMA Awareness Month, we are Connecting the Dots! Listen to Christiana, the patient expert, and Morgan, the researcher: "Deciphering the Molecular Landscape of Neuromuscular Development in Spinal Muscular Atrophy." 🔗 https://www.sma-europe.eu/donate #WeAreOne #SMAAwareness #ConnectingTheDots
🔬This Spinal Muscular Atrophy Awareness Month, from SMA Europe, we are Connecting the Dots! Research in SMA is vital.
Did you ever wonder how research can have a real impact on the lives of people who live with SMA? Only together, WeAreOne
#SMAAwareness #ConnectingTheDots #SpinalMuscularAtrophy
A light green-colored slide with a photo of Clara, a toddler in front of the blackboard, standing and sketching. Text reads “International Neonatal Screening Day 28 June 2025” (top right), “All Together. One Goal” stamp is on the top below the text. SMA Europe logo and NBSA logo are at the top left.
A light green slide featuring the SMA Europe logo, #WeAreOne and #SpinalMuscularAtrophy hashtags, and the SMA Europe website link: www.sma-europe.eu.
📣On #INSD2025, we mark SMA screening progress in Europe, from 0% to 65%. But no baby should be left behind.
Clara was diagnosed late. Many still are.
🔗 https://www.sma-screening-alliance.org/ | https://odysma.sma-europe.eu/
#SMA #newbornscreening #OdySMA #SMAawareness #raredisease #advocacy
A raspberry-colored slide with a photo of Bella, a young girl in a colorful wheelchair, playing with a bubble wand. A large bubble floats in front of her. Text reads “Meet Bella!” (bottom left) and “Real-life Stories on OdySMA!” (top center). SMA Europe logo is at the top left, and “All Together. One Goal” stamp is on the top right.
A raspberry-colored slide with a photo of Bella on a plane, her hand gently placed on the window. Text reads “Meet Bella!” (bottom left) and “Real-life Stories on OdySMA!” (top center). SMA Europe logo is at the top left, and “All Together. One Goal” stamp is on the top right.
A raspberry slide featuring the SMA Europe logo, #WeAreOne and #SpinalMuscularAtrophy hashtags, and the SMA Europe website link: www.sma-europe.eu.
Bella’s SMA story shows why early awareness matters. Her late diagnosis led to Greece’s 2024 screening—but her mom says: “Screening isn’t enough. We need awareness.”
🔗 https://odysma.sma-europe.eu/stories/Bella
📩 laura.gumbert@sma-europe.eu
#SMAAwareness #RareDisease #NewbornScreening
📢 White Paper on SMA NBS – Now in French!
We’re excited to share the French version is now live! Big thanks to @AFM-Téléthon 🙌
🔗 nbs-alliance-assets.gpm.digital/UTF_8_SMA_White_Paper_NB...
#SMAAwareness #NewbornScreening #PatientAdvocacy #SMA
A baby has become the first person to be successfully treated for a rare genetic disease before birth.
#GeneticMedicine #SpinalMuscularAtrophy #PrenatalCare #MedicalBreakthrough #SMAAwareness #RareDiseases #GeneTherapy #FDAApproval
@novartis.bsky.social #genetherapy #spinalmuscularatrophy #SMAtreatment #OAV101IT #onasemnogeneabeparvovec #typeIISMApatients #intrathecalformaulation #STEERstudy #genetransfertherapy #typeIIspinalmuscularatrophy #SMAawareness #Zolgensma #IVformulation #Neurology
pharmatimes.com/news/novarti...
