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SMA Europe SMA Europe is a non-profit umbrella organisation of SMA patient organisations from across Europe.

🔬 Introducing Friedrich Metzger to SMA Europe’s Scientific Advisory Board!💬 As Friedrich shares with us: "After having b...
13/10/2026

🔬 Introducing Friedrich Metzger to SMA Europe’s Scientific Advisory Board!

💬 As Friedrich shares with us: "After having been incredibly lucky to contribute to the generation and development of a life-saving medicine together with and for patients with SMA, I now want to provide my knowledge to the SMA society for the scientific and therapeutic challenges ahead of us."

Friedrich Metzger, PhD, brings more than 25 years of experience in drug discovery and development, particularly in neuromuscular and rare neurological diseases. At Roche, he led the preclinical development of an oral small-molecule splicing modifier approved for SMA treatment. He also co-founded VERSAMEB and is a retired Professor of Neurobiology at the University of Freiburg.

We look forward to working with Friedrich and drawing on his expertise to support scientific progress and the development of treatments that can make a meaningful difference for people living with SMA.

🔗 Read his full biography and learn more about our Scientific Advisory Board: https://bit.ly/4yB6VDX

🔬 Introducing Giovanni Baranello to SMA Europe’s Scientific Advisory Board!💬 Giovanni shares his thoughts on joining the...
13/10/2026

🔬 Introducing Giovanni Baranello to SMA Europe’s Scientific Advisory Board!

💬 Giovanni shares his thoughts on joining the SAB at SMA Europe: "I am very humbled and honoured to join the SMA Europe Scientific Advisory Board. I look forward to putting my passion and knowledge of SMA at the service of the whole SMA community and helping the continued growth of SMA science and clinical care. As an SAB member, I am enthusiastic about supporting SMA Europe's strategic priorities in research and care that have always been guided by the participation and the needs of people living with SMA"

Giovanni Baranello, MD, PHD, is a Professor of Paediatric Neuromuscular Disorders at University College London (UCL) and an honorary consultant at Great Ormond Street Hospital. His extensive experience includes clinical trials in Spinal Muscular Atrophy (SMA) and other neuromuscular conditions, with research focusing on treatment outcomes, biomarkers and the role of SMN protein in brain development and function.

We look forward to working with Giovanni and drawing on his expertise to advance SMA research and clinical care, guided by the priorities and needs of the SMA community.

🔗 Read his full biography and learn more about our Scientific Advisory Board: https://bit.ly/4yB6VDX

📣 Reminder: our next SMAcademy webinar is coming up soon!“Towards understanding SMA as a multisystem condition”🗓️ 15 Oct...
12/10/2026

📣 Reminder: our next SMAcademy webinar is coming up soon!

“Towards understanding SMA as a multisystem condition”

🗓️ 15 October 2026
⏰ 14:00–15:30 CET

As disease-modifying treatments continue to reshape SMA, research is increasingly looking beyond motor function to better understand how different biological systems may be involved.

This webinar will look beyond motor function to delve into other biological systems. In particular, Peter Claus will talk about network alterations beyond motor neurons, including bone and metabolic aspects, and Simon Parson will explain vascular involvement in SMA.

The session will help patient advocates better understand the growing evidence around SMA as a multisystem condition and what this may mean for research and care.

Please note that the Q&A session will be open to patient advocates only.

🔗 There is still time to register:
https://bit.ly/4zhaajY

Together, 🌍

SMA community puts its priorities at the heart of future research 📣From SMA Europe we are excited to share the publicati...
05/10/2026

SMA community puts its priorities at the heart of future research 📣

From SMA Europe 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.

The SMA Europe-led study brings together the perspectives of people living with spinal muscular atrophy (SMA), families and healthcare professionals across Europe to identify the research priorities that matter most to the SMA community.

As Peter Claus, co-author of the article and Professor at Hannover Medical School, explains:

“Defining research priorities is an important step in the field of both pre-clinical and clinical SMA research: Although therapies are available, there is still a substantial need for further research. The prioritization clearly outlines this demand.”

Read the full publication: https://link.springer.com/article/10.1186/s13023-026-04588-9

Today is the last day of Newborn Screening Awareness Month and we are celebrating six years of progress for SMA newborn ...
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 Newborn Screening Alliance has brought together patient organisations, clinicians, researchers, policymakers, industry partners and families around one shared goal: advancing newborn screening for spinal muscular atrophy.

For SMA, early diagnosis matters. Newborn screening can help diagnose babies with SMA before symptoms appear, supporting access to treatment as early as possible and helping prevent irreversible motor neuron loss.

And progress continues.

In 2026, Scotland launched a nationwide SMA newborn screening evaluation, while England confirmed nationwide screening, with rollout beginning in October 2026.

Across Europe and beyond, countries continue to move forward at different stages.

🌍 Where does the world stand on SMA newborn screening?

Explore the OdySMA Newborn Screening Map:
https://odysma.sma-europe.eu/data-views/status-sma-newborn-screening

Learn more about the SMA Newborn Screening Alliance and its work:
https://www.sma-screening-alliance.org/

Applications for SMA Europe’s 13th Call for Research Proposals close on 30 September 2026 at 16:00 UTC+1.This is an impo...
28/09/2026

Applications for SMA Europe’s 13th Call for Research Proposals close on 30 September 2026 at 16:00 UTC+1.

This is an important opportunity for researchers working to advance understanding of SMA and improve outcomes for people living with SMA.

Submit your proposal before the deadline:
🔗 https://www.sma-europe.eu/our-call-for-research-proposals

On 11 September 2026, the first cohort of the SMA Patient Advocate Training officially started its six-month learning jo...
25/09/2026

On 11 September 2026, the first cohort of the SMA Patient Advocate Training officially started its six-month learning journey.

19 trainees from 17 countries are taking part
The training equips patient advocates with the fundamental knowledge and skills they need to represent people living with SMA and engage effectively with the community and other stakeholders.
Over six months, participants will explore the principles of patient advocacy, SMA genetics, treatments and standards of care, the medicines’ lifecycle, healthcare systems and access, and critical issues in SMA.

The training content was developed by leading experts in their respective fields and endorsed by our SMAcademy Advisory Board.

We would like to acknowledge and thank our Advisory Board members for contributing their expertise and supporting the development of the programme:

Melissa Bowerman
Jan Geissler
Anush Gevorgyan
Moumita Ghosh
Charlotte Lilien
Jana Popova
Eva Stumpe

Want to learn more?

🔗 Discover the SMA Patient Advocate Training & SMAcademy here: https://www.sma-europe.eu/smacademy
🔗 Read the Rare Revolution Magazine article about SMAcademy: https://rarerevolutionmagazine.com/digitalspotlight/a-seat-a-voice-a-vote-reimagining-the-role-of-sma-patient-advocates-in-research-and-care/

Join our new SMAcademy webinar:“Towards understanding SMA as a multisystem condition”🗓️ 15 October 2026⏰ 14:00–15:30 CET...
24/09/2026

Join our new SMAcademy webinar:

“Towards understanding SMA as a multisystem condition”

🗓️ 15 October 2026
⏰ 14:00–15:30 CET

What can we learn by looking at SMA beyond motor function? 💡

As disease-modifying treatments continue to reshape SMA, research is increasingly looking beyond motor function to better understand how different biological systems may be involved.

This webinar will explore alterations beyond motor neurons, including bone and metabolic aspects, as well as cardiovascular and vascular involvement in SMA.

The session will help patient advocates better understand the growing evidence around SMA as a multisystem condition and what this may mean for research and care.

The Q&A session will be open to patient advocates only.

🔗 Register here: https://bit.ly/4yK4Ipk

Together, 🌍

📣 Kind reminder! The registration and the call for abstracts are still open for the 2nd International Clinical Care Symp...
23/09/2026

📣 Kind reminder! The registration and the call for abstracts are still open for the 2nd International Clinical Care Symposium on Spinal Muscular Atrophy, taking place on 4–5 March 2027 in Prague, Czech Republic.

Learn more about our Call for Abstracts and register here:
https://www.sma-europe.eu/clinical-care-symposium-prague-2027

The Symposium is organised by SMA Europe, with the valued support of our member organisation, SMÁci.

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