SMA Europe

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

Applications are open for SMA Europe’s SMA Patient Advocate Training!It is a unique, SMA-focused training designed to pr...
08/05/2026

Applications are open for SMA Europe’s SMA Patient Advocate Training!

It is a unique, SMA-focused training designed to provide patient advocates with essential knowledge and skills to represent people living with SMA.

This training supports patient advocates in building essential knowledge on Spinal Muscular Atrophy, patient advocacy, medicine development, and access pathways.

It consists of five self-paced modules covering SMA, patient advocacy, the medicines lifecycle, healthcare systems, and access pathways, and trainees earn a certificate upon full completion.

🗓 Info session: 22 May, 15:00
📅 Deadline: 30 June 2026

🔗 Join our info session, learn more, and apply here: https://www.sma-europe.eu/sma-patient-advocate-training

04/05/2026

Meet Anush Gevorgyan, a young patient advocate living with Spinal Muscular Atrophy.

Her story reflects a reality many people with SMA still face: lack of access to treatment...

At 24, she was struggling to do something many of us take for granted: eating independently. In Armenia, treatment was not approved, not available, and not affordable.

After support of her manager and crowdfunding, she began the treatment.

Within 10 days of starting therapy;

✨ She regained the ability to lift a fork.
✨ One year later, she is stronger, working, and advocating.

But she didn’t stop there. She turned her story into advocacy — founding Armenia’s first SMA organisation.

Yet today, she still needs to fundraise to stay on treatment.

This is not sustainable. This is not fair.

Access to treatment should never depend on crowdfunding. There are still battles to fight and win.

👀 Read more via the QR code in the photo or here: https://odysma.sma-europe.eu/stories/Anush

Do you have a story to share about access to SMA treatment? Contact Laura Gumbert at laura.gumbert@sma-europe.eu.

30/04/2026

Last day to apply!

🌍 SMA Patient Organisation Peer-Mentoring Programme: applications NOW open!

We’re bringing together patient organisations from across the globe to learn from each other and grow stronger—together 💪

Through our peer mentoring programme, you’ll be matched with another organisation to share experiences, tackle challenges, and exchange ideas.

During the programme, you will:
✨ Meet quarterly with your mentoring partner
✨ Join a yearly group session with SMA Europe
✨ Get access to tools and ongoing support

📅 Deadline extended to May 1st
👉 Apply here: https://bit.ly/4c15lm1

At this year’s International Scientific Congress on SMA in Budapest, we witnessed research that speaks directly to the h...
29/04/2026

At this year’s International Scientific Congress on SMA in Budapest, we witnessed research that speaks directly to the hopes of our community.

🏆 The Community Award was presented to Cian O’Connor for his innovative work on biomimetic materials that support motor neuron growth.

What makes this award especially meaningful is that it is selected by patient advocates, members of the SMA community who evaluate research based on its potential to make a real difference in daily life.

Dr. O’Connor’s project focuses on creating a material that mimics the environment of the spinal cord, helping motor neurons grow and interact more naturally.

💡 Why does this matter? Because through SMA Europe’s Priority Setting Project, the community identified motor neuron regeneration as the number one unmet need.

For families, individuals living with SMA, and caregivers, this kind of research represents more than scientific progress, it represents hope for the future.

🎥 Watch the video to hear directly from Dr. O’Connor about his work. https://youtube.com/shorts/ZE5kCck8IuU?feature=share

💬 We’d also love to hear from you: What research or progress in SMA gives you the most hope right now?

BREAKING NEWS! 📣EMA Committee for Medicinal Products for Human Use (CHMP) adopts positive opinion for ItvismaWe are plea...
24/04/2026

BREAKING NEWS! 📣

EMA Committee for Medicinal Products for Human Use (CHMP) adopts positive opinion for Itvisma

We are pleased to inform that today Novartis received EMA CHMP positive opinion for Itvisma, gene therapy for children two years and older, teens, and adults living with SMA.

The CHMP’s positive opinion will now be reviewed by the European Commission with a final decision expected in upcoming months.

✔️Please find attached a letter from SMA Europe with further details: https://bit.ly/4tvqM4X

✔️CHMP summary of opinion here:https://www.ema.europa.eu/en/documents/smop-initial/chmp-summary-positive-opinion-itvisma_en.pdf
✔️Novartis press release here: https://www.novartis.com/news/media-releases/novartis-receives-positive-chmp-opinion-itvisma-spinal-muscular-atrophy-sma

SMA Europe is working closely with Novartis and will share updates as soon as more information becomes available.

If you have any questions, please do not hesitate to reach out to us directly via DM.

A major step forward for babies in Europe 👶Great news: newborn screening for spinal muscular atrophy (SMA) is now live i...
22/04/2026

A major step forward for babies in Europe 👶

Great news: newborn screening for spinal muscular atrophy (SMA) is now live in both Scotland and Ireland.

Early diagnosis means treatment can begin before symptoms appear—giving babies the best possible start in life and dramatically improving outcomes.

This progress proves what advocacy can achieve. Now we need every country in Europe to give newborns the same chance.

21/04/2026

🎥 Don’t miss this: The story continues🫶🏻

The Rolling Story of SMA: 20 Years Together captures two decades of progress, but even more importantly, it shows the future we are building together.

Behind every milestone are patients, families, researchers, and advocates driving change forward every single day.

From innovation in research to improving access and care across Europe, our mission remains clear.

✨ Have you watched it yet?

🎬 Watch the full video here:
https://youtu.be/o39rNFzIwDE?si=5Xo5EdH5QKgiBq3D

Let’s keep moving forward, together!

💜 All together. One goal.

SMA Europe’s 20-year journey is a powerful reminder of what community can achieve 💜From volunteer beginnings around kitc...
15/04/2026

SMA Europe’s 20-year journey is a powerful reminder of what community can achieve 💜

From volunteer beginnings around kitchen tables to a global organisation leading research, advocacy, and collaboration, SMA Europe has helped shape real progress in SMA.

The recent Congress in Budapest brought together more than 1,000 participants, showing the strength of a truly multi-stakeholder community.

But the message is also clear: while treatments have changed lives, SMA is not yet cured, and the work toward equal access to diagnosis, treatment, and care continues.

🔗 Read the full article: https://bit.ly/4c8bsFg

A recent Rare Revolution Magazine feature highlights an important truth about SMA advocacy 💜At the 2026 Global SMAdvocac...
15/04/2026

A recent Rare Revolution Magazine feature highlights an important truth about SMA advocacy 💜

At the 2026 Global SMAdvocacy Day in Budapest, 70 advocates from 45 organisations representing 40 countries came together to connect, learn, and strengthen global advocacy.

The article also highlights SMAcademy, SMA Europe’s initiative to help patient advocates build the knowledge and confidence needed to engage in research, treatment access, policy, and care.

Because patient advocates should not only be heard, but should also be recognised as equal experts, with a seat, a voice, and a vote.

🔗 Read the full article: https://bit.ly/4sB1p0h

Rare Revolution Magazine’s latest feature reflects on how far SMA research has come in just 20 years 💜From a time with n...
14/04/2026

Rare Revolution Magazine’s latest feature reflects on how far SMA research has come in just 20 years 💜

From a time with no real treatment options to today’s multiple approved therapies, SMA research has transformed lives and changed what is possible.

But the article also reminds us of what still matters equitable access, better care across all ages, stronger clinical trial design with patient input, newborn screening and long-term outcomes and continued research toward even better therapies.

Progress has been remarkable, and hope continues to grow.

🔗 Read the full article: http://bit.ly/4tNTX34

All Together. One Goal.

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