SMA Europe

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

15/09/2025

Our 1st International Clinical and Care Symposium on SMA, held on 29-30 August 2025, in Milan, Italy, was a great success! 🥳

The Symposium brought together almost 200 participants from across the globe, and for the first time, we streamed an event online.

Our 1st International Clinical Care Symposium on SMA showed what happens when patients, caregivers, and clinicians come together:

- Knowledge shared
- Gaps identified
- Solutions set in motion

This was a first step. And more will follow.
Stay tuned.

Together,

14/09/2025

Only one week left!
5th SMA Scientific International Congress on Spinal Muscular Atrophy: submit your abstract now! 📣

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!

🔬 This year, for the first time, we are also inviting researchers, clinicians, and innovators to submit abstracts and host interactive workshops as part of our scientific programme.

Visit our website to find out more: https://congress.sma-europe.eu/

Together,

12/09/2025

Did you know?
You can submit an abstract and organise an interactive workshop at the 5th International Scientific Congress on SMA!

📍 Budapest, 11–14 March 2026

We invite attendees to propose and lead workshops as part of the scientific programme.

Possible topics include:

- Health Economics & Access to Therapies
- Optimising SMA Care
- Transdisciplinary Approaches in SMA Research
- From Bench to Business: Launching a Biotech Startup
- Innovations in Robotics, Nanotechnology & Beyond
- Public Health Perspectives in SMA
- Understanding and Managing Clinical Symptoms in SMA
- The Impact of Geopolitical Factors on Treatment Access
- Emerging Trends in Clinical Practice

👉 Submit your abstract today and be part of this milestone event shaped by the SMA community and dedicated to advancing research.
🔗 More details: https://congress.sma-europe.eu/abstract-submission-guidelines-for-workshops/

10/09/2025

New Publication!

We are very excited to share the latest article about our 2025 Awareness Campaign, "Connecting the Dots" written by Jacob Harney for SMA News Today.

The article highlights the importance of the campaign, focusing on the necessary connection between SMA and research communities.

It also enhances the outreach of the campaign, which has been shared by different members of the community, both individually and through their organisations, which always play an important role in its impact.

You may read full text here: https://smanewstoday.com/news/sma-awareness-campaign-aims-connect-research-patient-needs/

From SMA Europe, we will continue to connect the dots.
Together

05/09/2025

From SMA Europe, we want to share an important update regarding the application to include Risdiplam on the World Health Organization’s Model List of Essential Medicines (EML) and Essential Medicines for Children (EMLc). 📣

Earlier today, the WHO Expert Committee published the updated editions of the EML and EMLc. Unfortunately, the Committee decided not to recommend the inclusion of Risdiplam at this stage.

This outcome is disappointing, as recognition on the WHO EML/EMLc would have been an important step towards improving equitable access to Risdiplam for people living with SMA worldwide.

SMA Europe, together with many partners, had actively supported this application. We remain committed to pursuing all efforts that advance access to treatment and care for people living with SMA across Europe and globally.

You can find more details on the WHO website here: http://bit.ly/4mL5lJF

Thank you for standing together in advocating for access to essential treatments for our community.

All together. One goal.

05/09/2025

Our 1st International Clinical and Care Symposium on SMA, held on 29-30 August 2025, in Milan, Italy, was a great success! 🥳

The 1st International Clinical Care Symposium on SMA brought together almost 200 participants from across the globe. From powerful patient testimonies to compelling science, the message was clear: Focus cannot only be on medicines alone, but also on care.

This was a first step. And more will follow.
Stay tuned.

THANK YOU ALL for making history with us.

04/09/2025

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,

03/09/2025

Our CEO, Dr. Nicole Gusset’s interview is published in the RARE Revolution Magazine ’s latest edition "Beyond the Breakthroughs”.

In her interview, Nicole highlights the available SMA treatments, the power of our community, and the projects that drive us forward. While these milestones show how far we have come, she also emphasises that our journey is far from over. There is still much to be done, but together, with the strength of advocacy and our shared commitment, we remain dedicated to driving progress in research, care, and access.

🔗 Read the full interview here: bit.ly/4lO5Tx6

01/09/2025

Thank you all who watched, participated and engaged in our campaign!

At SMA Europe, we are proud to contribute, every day, so that the new, transdisciplinary and breakthrough research findings are possible.

📩 If you want to keep in touch, you can subscribe to our monthly newsletter here:
https://www.sma-europe.eu/

💙 And if you want to keep learning more about our Call for Research Projects initiative and support the research projects we fund, you can click here and donate:
🔗 https://www.sma-europe.eu/donate

Remember, only together,

28/08/2025

🔬 This Spinal Muscular Atrophy Awareness Month, from SMA Europe, we are Connecting the Dots!

Did you ever wonder how research can have a real impact on the lives of people who live with SMA?

Listen to Jakub, the patient expert, and Sorana, the researcher behind the project:
"Investigating Calcium-induced mitochondrial dysfunction in zebrafish and iPSC models of SMA."

🧪Through her investigation, Dr. Ciura and her team have identified links between calcium levels, mitochondrial function, and SMA symptoms, and will now investigate whether targeting calcium pathways could offer a new therapeutic strategy for SMA.

🌍 SMA Europe is unique in supporting cutting-edge scientific research on all aspects of Spinal Muscular Atrophy. No European organisation launches a research call focusing exclusively on SMA.

Research in SMA is vital.

Learn more about our Call for Research Projects initiative and support our efforts here:
🔗 https://www.sma-europe.eu/donate

Only together,

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