SMA Europe

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

16/06/2026

Coming soon! 📣

Join us on 17 June, from 14:30–16:00 CET, for our SMAcademy webinar: “Patient Experience Data: Turning lived experience into meaningful data.”

Featuring Steve Bourke, whose work focuses on patient engagement, digital health, and bridging science with lived experience and Nicole Gusset, CEO of SMA Europe.

How can patient communities turn lived experience into meaningful data that creates real change?

In this webinar, we will explore practical and accessible ways SMA communities can collect, use, and share patient experience data to strengthen advocacy, improve understanding, and influence research and care.

Through real-world examples and community-focused approaches, participants will discover how patient voices can become powerful evidence.

Check out our SMAcademy website to read more & register here: https://bit.ly/4uWdnmE

Together, 🌍

15/06/2026

We are pleased to launch SMA Europe’s Annual report 2025. 📘

This report reflects a year of collective actions and collaboration across our community. It highlights our work guided by our shared mission to improve the lives of people living with SMA.

Thank you to everyone who contributed to our work this year. Your commitment, expertise, and collaboration make our progress possible.

Together, we remain united by one goal: a better future for everyone living with SMA.

🔗 Read the full Annual Report 2025 here: https://heyzine.com/flip-book/44b4314044.html

10/06/2026

Upcoming Webinar Reminder 📣

Have you registered for our upcoming SMAcademy webinar yet?

🗓️ 17 June 2026
⏰ 14:30–16:00 CET

Featuring Steve Bourke, EUPATI Fellow, whose work focuses on patient engagement, and Nicole Gusset, CEO of SMA Europe.

How can patient communities turn lived experience into meaningful data that creates real change?

In this webinar, we will explore practical and accessible ways SMA communities can collect, use, and share patient experience data to strengthen advocacy, improve understanding, and influence research and care.

Through real-world examples and community-focused approaches, participants will discover how patient voices can become powerful evidence.

Check out our SMAcademy website to read more & register here: https://bit.ly/4uWdnmE

Together, 🌍

09/06/2026

Reminder: Applications for the SMA Patient Advocate Training close on 30 June 2026.

Be part of our SMAcademy initiative and build your knowledge to advocate for people living with Spinal Muscular Atrophy.

🔗 Learn more and apply here: https://www.sma-europe.eu/sma-patient-advocate-training

08/06/2026

SMA Europe was pleased to participate in the European Conference on Rare Diseases & Orphan Products, ECRD 2026, held on 3–4 June 2026 in Prague and online.

Under the theme “Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases,” ECRD brought together the rare disease community to reflect on progress, identify unmet needs, and contribute to shaping future rare disease policy in Europe.

We were also pleased to take part in the Blueprint workshop and proud to present our poster:
“Patients in the lead: embedding patient-led processes across advocacy domains at SMA Europe.”

The poster highlights how SMA Europe continues to place patient leadership at the centre of its work across advocacy, research, community engagement, and policy.

Our poster is available here: https://www.sma-europe.eu/resources

A big thank you to EURORDIS and all partners involved in creating this important space for collaboration, learning, and community-led action.

05/06/2026

From 28–30 May, we gathered in Helsinki, Finland, for our Annual Meeting 2026 and General Assembly, kindly supported by SMA Finland.

Over three days, our members, Board, staff, and invited guests came together for meaningful exchange, reflection, and collaboration. It was an important opportunity to share experiences, learn from one another, and align around our shared mission of creating a better world for all those living with SMA.

This year’s programme focused strongly on the future of our work. Together, we discussed SMA Europe’s Strategic Framework 2026–2030 and explored how we can bring it to life through concrete action.

The meetings also included best practice sharing and updates from SMAcademy, among others.
The event concluded with SMA Europe’s General Assembly Meeting, held in hybrid format to enable wider participation from our members.

We thank SMA Finland for their support and hospitality, and all our members, speakers, and participants for their contributions and input.

Together .

29/05/2026

📣 Save the Date!

🗓️ 4–5 March 2027
📍 Grandior Hotel Prague, Prague

SMA Europe’s 2nd International Clinical Care Symposium on Spinal Muscular Atrophy (SMA) is coming to Prague!

🏥 Musculoskeletal Care in SMA: From Research to Rehabilitation

This symposium will bring clinicians and multidisciplinary experts together to look at how musculoskeletal and thoracic care are connected in SMA, and how clinical care pathways can become more consistent across Europe.

Topics will include:

🔹 Scoliosis, contractures, bone health and fragility
🔹 Chest wall deformities and respiratory restriction
🔹 Nutrition, metabolism, growth and treatment status

🤝 Interactive workshops will explore clinical gaps, differences in practice, and priority areas across Europe.

📩 Contact SMA Europe for more information.

26/05/2026

Applications are still open for the SMA Patient Advocate Training.

Build your knowledge on Spinal Muscular Atrophy, advocacy, and access — and become a stronger voice in the community.

📅 Deadline: 30 June 2026

🔗 Learn more and apply here: https://www.sma-europe.eu/sma-patient-advocate-training

25/05/2026

Join our new SMAcademy webinar! 📣

“Patient Experience Data: Turning lived experience into meaningful data”

🗓️ 17 June 2026
⏰ 14:30–16:00 CET

Featuring Steve Bourke, MSc., MPhil., EUPATI Fellow, whose work focuses on patient engagement, digital health, and bridging science with lived experience.

How can patient communities turn lived experience into meaningful data that creates real change?

In this webinar, we will explore practical and accessible ways SMA communities can collect, use, and share patient experience data to strengthen advocacy, improve understanding, and influence research and care.

Through real-world examples and community-focused approaches, participants will discover how patient voices can become powerful evidence.

Check out our SMAcademy website to read more & register here: https://bit.ly/4uWdnmE

Together, 🌍

20/05/2026

Today, on Clinical Trials Day, we recognise the importance of research, collaboration, and patient participation in driving progress for the SMA community. 💜

Clinical trials are essential for advancing innovation, improving standards of care, and creating better futures for people living with SMA worldwide.

As Simona Joveska, Board Member at SMA Europe, shares:
“Clinical trials mean hope and progress for the SMA community. Every step in research brings us closer to better treatment, care, and quality of life.”

At SMA Europe, we remain committed to empowering patients and families with accessible information through our Clinical Trials Finder platform, helping connect the community with ongoing SMA research opportunities.

📲 Scan the QR code to explore the SMA Europe Clinical Trials Finder: https://clinical-trials.sma-europe.eu

Together, we continue to move research forward.
Together, 🌍

Adresse

Im Moos 4
Freiburg Im Breisgau
79112

Webseite

http://sma-europe.eu/

Benachrichtigungen

Lassen Sie sich von uns eine E-Mail senden und seien Sie der erste der Neuigkeiten und Aktionen von SMA Europe erfährt. Ihre E-Mail-Adresse wird nicht für andere Zwecke verwendet und Sie können sich jederzeit abmelden.