SMA Europe

SMA Europe SMA Europe is a non-profit umbrella organisation of SMA patient organisations from across Europe.
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What will the 5th International Scientific Congress on SMA focus on?The 5th International Scientific Congress on SMA wil...
13/01/2026

What will the 5th International Scientific Congress on SMA focus on?

The 5th International Scientific Congress on SMA will focus on advancing fundamental, translational, and clinical research in Spinal Muscular Atrophy.🧬

Across the programme, participants will engage in parallel scientific sessions and in-depth workshops exploring key research areas, including:
Biomarkers and disease modifiers in SMA
Regeneration, neuromuscular biology, and SMN-related mechanisms
Metabolism, nutrition, and systemic involvement in SMA
Sensorimotor function, fatigability, and respiratory outcomes
Optimising treatments and emerging therapeutic strategies
New standards of care and cognitive development in SMA

On 11 March, dedicated parallel workshops will further explore topics such as fatigability, electrophysiology, respiratory and nutritional care, biomarkers, and multidisciplinary SMA management.

Alongside the scientific programme, the Congress offers opportunities for networking, knowledge exchange, and dialogue across disciplines, while integrating patient-relevant perspectives into research and care discussions.

👉 Learn more and register: https://congress.sma-europe.eu/

📣 Community Update!High-Dose Regimen of nusinersen receives European Commission Approval for the treatment of SMABiogen ...
13/01/2026

📣 Community Update!

High-Dose Regimen of nusinersen receives European Commission Approval for the treatment of SMA

Biogen announced that the European Commission has granted marketing authorisation for a high-dose regimen of nusinersen (SPINRAZA®) for the treatment of SMA.

The high-dose regimen comprises a more rapid loading phase, with two 50 mg loading doses administered 14 days apart, and 28 mg maintenance dose injections every four months thereafter.

Full press release here: https://investors.biogen.com/news-releases/news-release-details/biogen-receives-european-commission-approval-high-dose-regimen.

📢 Late Breaking News session at our 5th SMA Scientific International CongressAbstract submission is now open!Our Congres...
08/01/2026

📢 Late Breaking News session at our 5th SMA Scientific International Congress

Abstract submission is now open!

Our Congress programme will feature a Late Breaking News session on Saturday, 14 March 2026, highlighting the most recent and impactful developments in the field of spinal muscular atrophy (SMA).

This session will include short presentations on:

- New clinical study data
- Real-world evidence (RWE)
- Fundamental and translational research

All findings must be previously unpublished in Europe at the time of the Congress.

🗓 Submission window: 5–25 January 2026
📩 Notification: by 6 February 2026

👉 Download the abstract template here: https://congress.sma-europe.eu/latenews/

📧 Send submissions to: sma-europe.events@medicongress.com

All together. One goal.

17/12/2025

As the year comes to a close, we extend our warmest season’s greetings to all members, partners, volunteers, and friends of the SMA community, reflecting with gratitude on the unity and resilience that define us.

Throughout 2025, we worked towards progress in SMA research, treatment opportunities, early access, and awareness across Europe. Together with our members and partners, we strengthened collaboration, amplified patient voices, and ensured that the needs of our community remained central to shaping science, care, and policy.

We also recognise the challenges that continue to affect many unequal access to diagnosis and treatment, knowledge gaps surrounding therapies, and the evolving needs of the SMA community as a whole. These realities remind us why our shared mission matters.

Looking ahead, we eagerly anticipate the 5th International Scientific Congress on SMA, where our global community will come together in Budapest to help shape the future of SMA science, care, policy and patient advocacy. We hope to see many of you there.

Thank you for your dedication and support throughout the year. ✨
May 2026 bring continued progress, stronger partnerships, and a better world for all those living with SMA. ✨

Warmest Season's Greetings and our best wishes for a joyful and impactful New Year! Together,

#2026

Thank You for Joining Our Webinar to celebrate the 5th Anniversary of SMA Europe Newborn Screening Alliance! A sincere t...
12/12/2025

Thank You for Joining Our Webinar to celebrate the 5th Anniversary of SMA Europe Newborn Screening Alliance!

A sincere thank you to everyone who attended our online event, “Screen at Birth, Save Lives — 5 Years of the European Alliance for Newborn Screening in Spinal Muscular Atrophy.”

We were honoured to bring together leading voices from across Europe to reflect on the Alliance’s achievements and explore new insights from the evolving newborn screening landscape.

A special thanks to our speakers: Στέλιος Κυμπουρόπουλος - Stelios Kympouropoulos, Jakub Tomczyk,Tamara Dagouloff, Johan Prevot, Eduardo Tizzano, Rudolf van Olden, and Marie-Christine Ouillade — for sharing their expertise, experiences, and inspiring perspectives.

For five years, the Alliance has united patient organisations, clinicians, researchers, programme leaders and families to work toward one shared goal: ensuring every child with SMA is diagnosed and treated as early as possible.

Thank you for your support.

Last 4 November, Nicole Gusset, CEO of SMA Europe, took part in a press conference in Warsaw presenting nearly seven yea...
11/12/2025

Last 4 November, Nicole Gusset, CEO of SMA Europe, took part in a press conference in Warsaw presenting nearly seven years of real-world data from Poland’s B.102 drug programme for Spinal Muscular Atrophy (SMA). 📣

During the event, Nicole Gusset highlighted, among others, the mission of SMA Europe: to close remaining gaps in newborn screening, treatment access, and multidisciplinary care across the continent:

"By driving collaboration between our member organisations, patients, clinicians, policymakers and researchers, we aim to turn scientific advances into tangible, lasting improvements in people’s lives.”

With new therapeutic developments on the horizon, these findings mark an important step forward for the SMA community.

Fundacja SMA

09/12/2025

It’s the 5th anniversary of the SMA Newborn Screening Alliance! 📣

Five years ago, SMA Europe established the SMA NBS Alliance to unite experts, policymakers, clinicians, industry partners, and SMA families behind one shared goal: making SMA newborn screening a reality across Europe.

In SMA, early identification is the difference between muscle loss and a stronger start to life. No person should miss the chance for timely treatment simply because they were not screened at birth.

Together, we can ensure every child gets the best possible start.
Learn more on our NBSA website: https://www.sma-screening-alliance.org/

05/12/2025

“Being part of SMA Europe is truly special because it’s not just an organisation. It’s a community full of people who care deeply, who listen, and who act.”

Anush Gevorgyan, a Youth Group member from Armenia, beautifully captures what makes our community so special.

At SMA Europe, it’s the commitment, empathy, and determination of our volunteers that make our community thrive. Your voices inspire change, your kindness builds connection, and your energy moves us forward.

Happy International Volunteer Day, and thank you to all our amazing volunteers! 🌍

Together, we are stronger.
Together, 💫

05/12/2025

At SMA Europe, every voice matters and every volunteer makes a difference. 💙

Jane, Youth Group member from North Macedonia, shares, "It is where I expect I have a special impact even as a young volunteer and where I feel that my voice is heard."

To all our amazing volunteers, thank you for your energy, kindness, and unwavering dedication. You inspire change and help our community grow stronger every day. 🌍

Together, we are stronger.
Together, 💫

05/12/2025

At SMA Europe, being a volunteer means being part of something bigger, a family built on care, trust, and shared purpose. 💙
Ayça, Adult Committee Member & Volunteer from Türkiye, beautifully expresses it: “It feels like belonging to a family where the slogan is no one is left behind.”

To all our incredible volunteers, thank you for your kindness, commitment, and strength. You are the heart of our community. 🌍

Together, we are stronger.
Together, 💫

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Im Moos 4
Freiburg Im Breisgau
79112

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