SMA Europe

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

Children and adults are dying not because SMA is untreatable, but because systems fail in emergencies.Let’s not wait for...
28/07/2025

Children and adults are dying not because SMA is untreatable, but because systems fail in emergencies.

Let’s not wait for another preventable loss.

Join the conversation. Be part of the solution.

1st International Clinical and Care Symposium taking place on 29-30 August in Milan, Italy.
In-person and online registrations are available: https://www.sma-europe.eu/sma-care-symposium

Consult the programme here:https://assets.sma-europe.eu/SMA_Care_Symposium25_Programme_short_576810870b.pdf

Together,

"Because of my scoliosis, my heart is not in its right place. One day at the hospital in the Emergency Room, the cardiol...
24/07/2025

"Because of my scoliosis, my heart is not in its right place. One day at the hospital in the Emergency Room, the cardiologist panicked because she couldn’t find my heartbeat.”

Are you a healthcare professional treating SMA patients? Join international experts, patient leaders, and caregivers in Milan this August to tackle one of the most urgent challenges in rare disease care: Preventable death and suffering during SMA emergencies. Be part of building the care protocols we urgently need.

1st International Clinical and Care Symposium taking place on 29-30 August in Milan, Italy.
In-person and online registrations are available: https://www.sma-europe.eu/sma-care-symposium

Consult the programme here:https://assets.sma-europe.eu/SMA_Care_Symposium25_Programme_short_576810870b.pdf

Together,

"In that moment, I knew my child was in danger, but the ER team had no idea what to do with an SMA patient."Caregivers s...
22/07/2025

"In that moment, I knew my child was in danger, but the ER team had no idea what to do with an SMA patient."

Caregivers should not have to educate the ER in a crisis.

Let us talk about it and exchange our knowledge at the 1st International Clinical and Care Symposium taking place on 29-30 August in Milan, Italy.
In-person and online registrations are available: https://www.sma-europe.eu/sma-care-symposium

Consult the programme here:https://assets.sma-europe.eu/SMA_Care_Symposium25_Programme_short_576810870b.pdf

Together,

SMA Europe took part in this year’s Cure SMA Annual SMA Conference, a cornerstone event for the global SMA community. T...
21/07/2025

SMA Europe took part in this year’s Cure SMA Annual SMA Conference, a cornerstone event for the global SMA community.

Throughout the week, our team participated in steering committee meetings and held key discussions with stakeholders about the future of SMA research and treatments. At the Research & Clinical Care Meeting, Yasemin Erbas, Nicole Gusset-Burgener and Federica presented three posters highlighting some of our key projects:
• A Pan-European survey on Clinical Trial Participation in SMA
• OdySMA, which tracks access to SMA treatments across Europe
• Our study on the Top 10 Community-Driven Research Priorities in SMA

We also engaged in the broader Annual SMA Conference, attended by families, researchers, and advocates. Here, we presented a family-friendly version of our research priorities poster, deepening our dialogue with the American SMA community and learning more about their experiences and perspectives.

Additionally, our team contributed to an international patient advocacy meeting, where Nicole spoke about the critical role of research in shaping the future for the SMA community and Yasemin presented on the importance of evolving description of SMA and its impact on access to treatment and care.

We extend our sincere congratulations to Cure SMA for another successful and inspiring event. We look forward to continuing these important conversations at our upcoming events:

• Clinical Care Symposium, Milan, 29–30 August 2025 🔗 https://www.sma-europe.eu/sma-care-symposium
• International Scientific Conference, Budapest, 11–14 March 2026 🔗 https://congress.sma-europe.eu/

New Publication!Our CEO, Nicole Gusset, co-authored the “Navigating Patient-Focused Innovation: One Company’s Journey wi...
18/07/2025

New Publication!

Our CEO, Nicole Gusset, co-authored the “Navigating Patient-Focused Innovation: One Company’s Journey with the SMA Community”, published by DIA Global Forum.

The article illustrates how partnering with patient organisations can drive the patient-centred solutions and actions towards the necessary innovation. Thank you to all who participated!

You can read the full publication here: https://globalforum.diaglobal.org/issue/july-2025/navigating-patient-centric-innovation-one-companys-journey-with-the-sma-community/

Together,

"Whenever I get sick, I start vomiting. It will not stop until I get glucose and potassium intravenous. My body goes int...
17/07/2025

"Whenever I get sick, I start vomiting. It will not stop until I get glucose and potassium intravenous. My body goes into ketoacidosis fast. In Emergency Rooms, they wait for lab tests first, but by then, it can be too late. I need protocols that start immediately."

People living with SMA repeatedly end up in life-threatening metabolic crises, and this is preventable. Let us exchange our knowledge to build faster, smarter emergency response pathways.

Join us at the 1st International Clinical and Care Symposium taking place on 29-30 August in Milan, Italy.
In-person and online registrations are available: https://www.sma-europe.eu/sma-care-symposium

Consult the programme here:https://assets.sma-europe.eu/SMA_Care_Symposium25_Programme_short_576810870b.pdf

Together,

16/07/2025

5th SMA Scientific International Congress on Spinal Muscular Atrophy: submit your abstract and register! 📣

SMA Europe takes great pride in inviting scientists, young researchers, clinicians, and other healthcare professionals from around the world to attend the 5th International Congress on SMA. The event will take place from 11th to 14th March 2026 in Budapest, Hungary. 🤓

🧬 During our last Congress in Ghent, all seats were sold out before the event, so make sure you register as soon as possible and don't miss out!

🔬 Visit our website to find out more about the key dates and abstract submission: https://congress.sma-europe.eu/
Together,

"Choking is rare for me. But when it happens and no one is there to help with tools like the Cough Assist, I panic. Ever...
15/07/2025

"Choking is rare for me. But when it happens and no one is there to help with tools like the Cough Assist, I panic. Every second feels critical, and I am powerless. We have tried many times to set up an emergency plan — but still have none."

Stories like these show us: emergency preparedness in SMA is not optional; it is lifesaving.

Let us talk about it and exchange our knowledge at the 1st International Clinical and Care Symposium taking place on 29-30 August in Milan, Italy.

In-person and online registrations are available: https://www.sma-europe.eu/sma-care-symposium

Together,

📣 We’re excited to launch SMA Europe’s Annual Report 2024!Read the full document to discover the projects and initiative...
11/07/2025

📣 We’re excited to launch SMA Europe’s Annual Report 2024!

Read the full document to discover the projects and initiatives we’ve led to achieve our mission: a better world for everyone living with SMA. 🙌
All together. One goal.

A big thanks to all who have contributed in our mission and continue to walk this path with us.

Together, .💜

🔗 Read the report here: https://heyzine.com/flip-book/94ea793aba.html /8

What’s more urgent than saving a life? 📣Today, children and adults with Spinal Muscular Atrophy (SMA) are still dying un...
10/07/2025

What’s more urgent than saving a life? 📣

Today, children and adults with Spinal Muscular Atrophy (SMA) are still dying unnecessarily during emergencies. Not because prevention or treatment do not exist, but because healthcare systems lack the knowledge on how to respond:

- Emergency protocols are missing, too vague or not followed.
- Families are left without tools or guidance.
- Emergency teams are often untrained in SMA.
- And when every second counts, hesitation costs lives.

That is why at SMA Europe we are launching our 1st International Clinical Care Symposium: "Medical Emergencies in SMA: pathophysiology, prevention, and response", taking place in Milan, Italy on 29–30 August 2025.

https://www.sma-europe.eu/sma-care-symposium

We urgently need better protocols, better understanding, and stronger collaboration between patients, caregivers, and medical teams across Europe and beyond.

This Symposium is our call to action.
Join us.

In-person and online registrations are still available: https://na.eventscloud.com/ereg/newreg.php?eventid=837551&

08/07/2025

You can still register and participate at our 1st International Clinical Care Symposium on SMA, taking place on 29–30 August 2025 in Milan, Italy.

The first edition, “Medical Emergencies in SMA: Pathophysiology, Prevention, and Response”, will focus on the causes, management, and prevention of acute medical events that can lead to life-threatening emergencies for individuals living with SMA.

📅 In-person and online registrations are still available!

Join us in Milan to advance clinical care, improve patient outcomes, and foster collaboration. Stay tuned—more details are available on our website!

https://www.sma-europe.eu/sma-care-symposium



[Description of the video: A blue-themed slide features a photo of a symposium poster displaying the text: "1st International Clinical Care Symposium on Spinal Muscular Atrophy" and "29-30 August 2025, Milan, Italy." The SMA Europe logo is positioned in the bottom left corner.]

03/07/2025

Welcome to SMA Europe Youth SMArt TV. This is Episode 5: Fair Access to Treatments.

In this episode, we shine a light on access to SMA treatments. While life-changing therapies for SMA exist, many people still can’t access them. Barriers like strict eligibility rules based on age, SMA type, respiratory support use, or even just the country they live in continue to stand in the way. 🌍

Access differs significantly across individuals and countries. That’s why SMA Europe launched OdySMA – a quest to access, a participatory initiative that identifies barriers and empowers advocates to push for change. Together, we aim to ensure no one is left behind. Learn more about OdySMA here 👉 odysma.sma-europe.eu

Now let’s hear from our youth group across a variety of countries as they raise their voices for fairness, equality, and the right to access SMA medicines. 💪💜

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