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SMA Europe @sma-europe.bsky.social · 09/10/2026

📣 Reminder: our next #SMAcademy webinar is coming up soon! “Towards understanding SMA as a multisystem condition” 🗓️ 15 Oct 2026 ⏰ 14:00–15:30 CET There is still time to register: bit.ly/4zhaajY #SMA #SMAEurope #SMAResearch

Green slide reminding readers about the upcoming SMAcademy webinar, “Towards understanding SMA as a multisystem condition,” taking place on 15 October 2026 from 14:00 to 15:30 CET. It notes that the SMAcademy Webinar Series is designed for patient advocates and that the Q&A session will be open to patient advocates only.

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SMA Europe @sma-europe.bsky.social · 05/10/2026

We are excited to share the publication of “From questions to impact in spinal muscular atrophy – identifying community-driven research priorities through a multi-stakeholder European initiative” in the Orphanet Journal of Rare Diseases. link.springer.com/article/10.1186/s…

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SMA Europe @sma-europe.bsky.social · 30/09/2026

Today is the last day of Newborn Screening Awareness Month and we are celebrating six years of progress for SMA newborn screening. For six years, the SMA NBSA has been working to advance newborn screening for SMA and support earlier diagnosis. 🔗 www.sma-screening-alliance.org #SMA #NBSA

Green slide celebrating six years of the SMA Newborn Screening Alliance. Text reads: “Working to advance newborn screening for spinal muscular atrophy across Europe” and “Six years. Many milestones. One shared goal.”

Green slide highlighting progress in 2026. Scotland launched a nationwide SMA newborn screening evaluation in March 2026. England confirmed nationwide screening, with rollout beginning in October 2026.

Green slide asking, “Where does the world stand?” Text invites readers to explore the OdySMA Newborn Screening Map to see the current status of SMA newborn screening around the world. A QR code links to the map.

Green slide with the heading “The work continues.” Text says that six years on, the goal remains the same: helping make SMA newborn screening a reality across Europe. A QR code links to more information about the Alliance. The slide closes with “All Together. One Goal.”

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SMA Europe @sma-europe.bsky.social · 28/09/2026

Final days to apply! 📢 SMA Europe’s 13th Call for Research Proposals closes on 30 September 2026, 16:00 UTC+1. Submit your proposal here: 🔗 www.sma-europe.eu/our-call-for-rese… #SMA #SpinalMuscularAtrophy #Research #WeAreOne

Blue slide announcing the last call for the 13th Call for Research Proposals. Applications close on 30 September 2026 at 16:00 UTC+1. A QR code link to the website for more information.

Blue slide showing key dates: application submission deadline, 30 September 2026 at 16:00 UTC+1; internal check and screening, October 2026; scientific, internal and SMA Community review, November 2026 to February 2027; final decision and notification of applicants, March to April 2027. A QR code link to the website for more information.

Blue closing slide with the hashtags #WeAreOne and #SpinalMuscularAtrophy, the website www.sma-europe.eu, and a microscope icon.

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SMA Europe @sma-europe.bsky.social · 25/09/2026

The first #SMAcademy SMA Patient Advocate Training cohort has started. 🌍 19 trainees from 17 countries are beginning a six-month programme designed to strengthen the knowledge and skills needed for effective SMA patient advocacy. 🔗 www.sma-europe.eu/smacademy #SMA #PatientAdvocacy #WeAreOne

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SMA Europe @sma-europe.bsky.social · 24/09/2026

Join our next #SMAcademy webinar: “Towards understanding SMA as a multisystem condition” 🗓️ 15 Oct 2026 ⏰ 14:00–15:30 CET Explore SMA beyond motor function, including bone, metabolic, cardiovascular and vascular involvement. 🔗 bit.ly/4yK4Ipk #SMA #SMAEurope #SMAResearch

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SMA Europe @sma-europe.bsky.social · 23/09/2026

Kind reminder! The registration and the call for abstracts still open for the 2nd International Clinical Care Symposium on SMA, taking place on 4–5 March 2027 in Prague, Czech Republic. 📣 🔗https://www.sma-europe.eu/clinical-care-symposium-prague-2027 #SMA #SMACare #WeAreOne #RareDiseases

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SMA Europe @sma-europe.bsky.social · 15/09/2026

SMA Europe’s 13th Call for Research Proposals closes on 30 September 2026! Submit your proposal before the deadline: 🔗 www.sma-europe.eu/our-call-for-rese… #SMA #SpinalMuscularAtrophy #Research #WeAreOne

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SMA Europe @sma-europe.bsky.social · 14/09/2026

Scholar Rock announced FDA approval of apitegromab (Isembyld) for SMA on 11 September 2026. SMA Europe is in close contact with Scholar Rock and will share further information on the European marketing authorisation as soon as possible. 🔗https://bit.ly/4yFfT2M #treatment #sma #community #weareone

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SMA Europe @sma-europe.bsky.social · 09/09/2026

Have you read Lassi’s story yet? For years, adults with SMA were excluded from treatment reimbursement while their conditions continued to progress. “Access delayed is never neutral.” Read Lassi’s story here: odysma.sma-europe.eu/stories/Lassi #SMA #OdySMA #AccessToTreatment

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SMA Europe @sma-europe.bsky.social · 08/09/2026

📣 Last reminder: Our next #SMAcademy webinar is coming up! Long-term responses to disease-modifying treatments in SMA 🗓️ 15 September ⏰ 17:00–18:30 CEST 🎙️ Tina Duong, MPT, PhD 🔗 Register via QR code. #SMA #Research #WeAreOne

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SMA Europe @sma-europe.bsky.social · 03/09/2026

The EUPESMA Survey revealed that only 30.7% could choose which SMA medicine to start, while 89.6% consider stabilisation to be meaningful progress. Treatment decisions should reflect the priorities of people living with SMA. 🔗https://heyzine.com/flip-book/f9722b6437.html #EUPESMA #SMAEurope

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SMA Europe @sma-europe.bsky.social · 02/09/2026

📣 Reminder: Our next #SMAcademy webinar is coming up! Long-term responses to disease-modifying treatments in SMA 🗓️ 15 September ⏰ 17:00–18:30 CEST 🎙️ Tina Duong, MPT, PhD 🔗 Register: shorturl.at/M1FFJ #SMA #Research #WeAreOne

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SMA Europe @sma-europe.bsky.social · 02/09/2026

Applications remain open for SMA Europe’s 13th Call for Research Proposals, but the deadline is getting closer. Deadline: 30 September 2026, 16:00 UTC+1. Learn more and apply here: 🔗 www.sma-europe.eu/our-call-for-rese… #SMA #SpinalMuscularAtrophy #Research #WeAreOne

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SMA Europe @sma-europe.bsky.social · 31/08/2026

🎬 3, 2, 1... Cut... for now! Thank you to our Rolling Journalists, guests, and everyone who followed the campaign. Explore the full journey: www.sma-europe.eu/awareness2026 #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 31/08/2026

For our second and final message before we cut, Orestis asks Vicky what she would tell someone newly diagnosed with SMA. She highlights standards of care, individual needs, and why no one should navigate a diagnosis alone.🎬 www.sma-europe.eu/awareness2026 #sma #smawarenessmonth2026 #weareone

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SMA Europe @sma-europe.bsky.social · 31/08/2026

Before we cut, two final messages remain. First, Orestis speaks with Georgia Ciouta about advocacy, barriers facing the SMA community in Greece, and why meaningful change begins when communities raise their voices and act together. 🎬 www.sma-europe.eu/awareness2026

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SMA Europe @sma-europe.bsky.social · 29/08/2026

What does recognition from the SMA community mean? Eugenio reflects on receiving the Lifetime Achievement Award and the relationships shaping his journey. #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 28/08/2026

How should meaningful SMA outcomes be defined? Eugenio explains why success includes independence, participation, quality of life, and personal goals. #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 27/08/2026

What inspires a lifetime of caring for people with SMA? Eugenio reflects on trust, honest conversations, and learning alongside patients and families. #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 26/08/2026

What do SMA families in resource-limited settings need? Moumita Ghosh calls on stakeholders to listen, collaborate, and bridge resource gaps. #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 25/08/2026

Access to care should not depend on where you live. Moumita Ghosh shares why advocacy is vital to reducing inequalities in diagnosis, treatment, and care. #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 24/08/2026

Nicole speaks with Moumita Ghosh about healthcare barriers, resilience, and why no one should be left behind in the fight for SMA treatment and care. #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 21/08/2026

Every advocate has a story. Nicole meets Moumita Ghosh of Cure SMA India to learn how lived experience transformed her into a passionate advocate. #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 20/08/2026

Why are patient organisations essential to SMA research? Melissa Bowerman explains how they connect science with community needs and lived experience. #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 19/08/2026

What can people living with SMA teach researchers that data cannot? Seda asks Melissa Bowerman why science is strongest when informed by lived experience. #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 18/08/2026

Where is SMA research heading next? Melissa Bowerman shares her vision for personalised therapies, better outcomes, and deeper understanding. 🔬 #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 17/08/2026

What inspires more than 20 years of SMA research? Melissa Bowerman reflects on the people, discoveries, and progress that motivate her. 🔬 #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 16/08/2026

What happens when researchers and people living with SMA work together? Melissa Bowerman explains why meaningful research begins with listening. 🤝 #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 14/08/2026

Nicole meets Melissa Bowerman to hear about her journey into SMA research and why working closely with the community is essential to her science. 🎥#sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 13/08/2026

What keeps researchers motivated? Delia Gagliardi shares how connections with people living with SMA and scientific progress fuel her work. 🔬 #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 12/08/2026

Every researcher has a story. Lucia meets Delia Gagliardi to discover what sparked her interest in SMA and inspired her research career. 🎥 #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 11/08/2026

What makes a good biomarker? Lucia speaks with Florian Gerstner about c-Fos, a protein that could potentially become a valuable SMA biomarker. 🔬 #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 10/08/2026

Can one protein help explain why SMA affects people differently? Lucia speaks with Florian Gerstner about Plastin-3 and its potential role in SMA. 🔬 #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 06/08/2026

What happens before motor neurons are lost in SMA? Ilgaz speaks with Leonie Sowoidnich about evidence that synapse loss may happen first and why this matters. 🔬 #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 05/08/2026

How can brain research help us understand SMA? Ilgaz speaks with Leonie Sowoidnich about dopamine dysregulation, motor impairment, and posture. 🧠 #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 04/08/2026

Are you working on research that could help advance understanding of SMA? Applications are open for SMA Europe’s 13th Call for Research Proposals. Deadline: 30 September 2026, 16:00 UTC+1. 🔗 www.sma-europe.eu/our-call-for-rese… #SMA #SpinalMuscularAtrophy #Research #WeAreOne

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SMA Europe @sma-europe.bsky.social · 04/08/2026

What should be the common goal for the years ahead in SMA? Nadya asks Stefania Corti why listening to the real priorities of the community is essential. 🎥 #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 03/08/2026

What does personalised care mean in SMA? Nadya speaks with Stefania Corti about why every journey is unique and how research can support individualised care. 🎥 #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 01/08/2026

🎬 Following today’s #321Rolling launch, Jakub, parent advocate and SMA Europe Board Member, explains why SMA research must continue and why supporting experienced and young researchers matters. #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 01/08/2026

🎥 Today, 1 August, the cameras start rolling! Created with young people living with SMA, #321Rolling shares the voices of our community and explores why research matters. #sma #smawarenessmonth2026 #weareone #awareness #august

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SMA Europe @sma-europe.bsky.social · 31/07/2026

Join our new #SMAcademy webinar! 📣 “Long-term responses to disease-modifying treatments in SMA” 🗓️ 15 September 2026 ⏰ 17:00–18:30 CEST 🎤 Tina Duong, MPT, PhD 🔗 shorturl.at/JKRq4 #SMAEurope #SMAResearch #WeAreOne

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SMA Europe @sma-europe.bsky.social · 29/07/2026

The EUPESMA Survey revealed persisting challenges for access to SMA care and continuity of treatment. Availability alone is not enough. People living with SMA need timely, equitable and sustainable access throughout their lives. 🔗https://heyzine.com/flip-book/f9722b6437.html #EUPESMA #SMAEurope

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SMA Europe @sma-europe.bsky.social · 28/07/2026

Meet Lassi, from Finland. For years, adults with SMA were excluded from treatment reimbursement while their conditions continued to progress. “Access delayed is never neutral.” Read Lassi’s story here: shorturl.at/qh1Nm #SMA #OdySMA #AccessToTreatment

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SMA Europe @sma-europe.bsky.social · 22/07/2026

SMA Europe’s 13th Call for Research Proposals is open. This is a valuable opportunity for researchers working to advance SMA research and improve outcomes for people living with SMA. 🔗 www.sma-europe.eu/our-call-for-rese… #SMA #Research #WeAreOne

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SMA Europe @sma-europe.bsky.social · 17/07/2026

Breaking news: newborn screening for SMA will reach all babies in England by October 2027. Congratulations to the UK SMA community and our member SMA UK for helping make this possible. 💙 Read more: smauk.org.uk/advocacy/newborn-scree…

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SMA Europe @sma-europe.bsky.social · 17/07/2026

Help shape the future of SMA musculoskeletal care. Join experts in Prague📍& online 💻, 4–5 Mar 2027, to explore new approaches & outcomes. www.sma-europe.eu/clinical-care-sym… #SMA #SMACare #WeAreOne #ClinicalCare

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SMA Europe @sma-europe.bsky.social · 15/07/2026

Progress happens when expertise, evidence & innovation come together. Submit your abstract now! Join SMA care experts in Prague📍& online 💻, 4–5 Mar 2027. www.sma-europe.eu/clinical-care-sym… #SMA #SMACare #WeAreOne #MusculoskeletalCare #ClinicalCare

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SMA Europe @sma-europe.bsky.social · 14/07/2026

SMA Europe was pleased to join the Cure SMA Annual SMA Conference in Orlando, 23–28 June 2026. Federica Fontana presented our work on EUPESMA 2025, community-driven research priorities, and the SMA Emergency Card template. Thank you to Cure SMA and the global SMA community! #SMA #CureSMA #Advocacy

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SMA Europe @sma-europe.bsky.social · 13/07/2026

Diverse expertise, bold ideas & shared ambition can shape SMA musculoskeletal care. Join us in Prague📍& online 💻, 4–5 Mar 2027. www.sma-europe.eu/clinical-care-sym… #SMA #SpinalMuscularAtrophy #SMACare #WeAreOne #ClinicalCare

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