SMA Europe

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

10/11/2025

Today, we celebrate World Science Day for Peace and Development.🧬🌍

Thomas Koed Doktor , PhD, Chair of the Treatment Committee at SMA Europe, reminds us: “Science builds bridges between people, ideas, and possibilities.”

At SMA Europe, we believe that every discovery, every insight, and every act of curiosity can connect us across disciplines and borders, driving patient-centred research in the SMA field.

Let’s keep connecting the dots: for progress, equality, and hope. Together, we shape a future where no one is left behind. 💫

Between 27 and 30 October, our SMA Europe Staff Team gathered in Freiburg, Germany for a few days of team-building and r...
07/11/2025

Between 27 and 30 October, our SMA Europe Staff Team gathered in Freiburg, Germany for a few days of team-building and reflection.

It was a wonderful opportunity to review our ongoing projects and initiatives, contribute to the planning of 2026, and strengthen our shared vision for the future.

Moments like these remind us that behind every impactful project is a team united by purpose, trust, and a lot of motivation.

All together. One goal. đź’«

04/11/2025

Have you explored our Clinical Trials Finder yet?

"With just a few inputs, you can find every clinical trial relevant to you — not only in Europe, but across the world.” Nicole from our Youth Group in South Africa.

đź”— Access the website here: http://bit.ly/4gBNl29
đź”— Q&A subsite: http://bit.ly/46k2PVc

28/10/2025

Let’s make sure everyone in our SMA community knows about the Clinical Trials Finder! 💜

“For us, knowledge really is power. Staying informed about new treatments can make all the difference.” Elise from our Youth Group in The Netherlands.

đź”— Access the website here: http://bit.ly/4gBNl29
đź”— Q&A subsite: http://bit.ly/46k2PVc

22/10/2025

Still haven’t checked our Clinical Trials Finder out? 👀

"It gives me hope. It shows me that science is moving forward and that we have the right to be part of it” Orestis from our Youth Group in Greece.

đź”— Access the website here: http://bit.ly/4gBNl29
đź”— Q&A subsite: http://bit.ly/46k2PVc

New Publication!We are excited to share the latest article about our Clinical Trials Finder, written by SMA News TodayTh...
16/10/2025

New Publication!

We are excited to share the latest article about our Clinical Trials Finder, written by SMA News Today

The article highlights the importance of this new online tool, designed by SMA Europe to help patients, families, and clinicians easily explore ongoing SMA clinical trials across Europe and worldwide.

It presents the tool as “the go-to global resource” for transparent and accessible information on clinical research — offering a centralised, user-friendly platform where the SMA community can search for trials tailored to individual needs and stay informed with real-time updates.

You can read the full text here: http://bit.ly/4nQf8yT (link also in Bio)

đź”— Explore the tool here: http://bit.ly/4gBNl29 (link also in Bio)

We will continue to empower our community with knowledge and tools that connect science and patients. Together

14/10/2025

Nadya Karachevtseva, Patient Advocate & Volunteer, reminds us why access to clear and reliable information matters.

The Clinical Trials Finder empowers our community to find opportunities that fit their needs — by age, type, and location.

Check it out now!

đź”— http://bit.ly/4gBNl29 | đź”— http://bit.ly/46k2PVc

On 23 September, the Newborn Screening Alliance (NBSA) took part in the meeting “NBS for Rare Diseases: How Can the EU L...
10/10/2025

On 23 September, the Newborn Screening Alliance (NBSA) took part in the meeting “NBS for Rare Diseases: How Can the EU Lead on the Global Stage?” at the European Parliament.

Invited by Members of the European Parliament Tomislav Sokol (Croatia), Sirpa Pietikäinen (Finland) and Billy Kelleher (Ireland), the discussion brought together policymakers, patient representatives and experts to address inequities in access to newborn screening across Europe and to explore the potential of new screening technologies, including whole-genome sequencing.

Marie-Christine Ouillade, Chair of the NBS Alliance Steering Committee and Board Member of SMA Europe, attended the meeting and contributed to the exchange in her capacity as Chair of the Alliance.

A heartfelt thanks to the European Parliament for highlighting the importance of ensuring equitable and timely access to newborn screening and for continuing to prioritise rare diseases on the EU agenda.

09/10/2025

Welcome to SMA Europe Youth SMArt TV!
This is Episode 7: Elise’s Journey with SMA. 💜

In this episode, we meet Elise from the Netherlands, a 24-year-old living with SMA who shares her story of embracing life with positivity and determination.

“I was born with SMA and I’ve never really been able to walk. From an early age, I also started using artificial respiration. Even though my life looks a bit different from others, I try to live it in the most positive and fun way I can,” says Elise.

Elise’s story reminds us of the importance of equitable access to treatment. In the Netherlands, she receives an SMA medicine even while on invasive ventilation, a powerful example of how inclusive access policies can change lives.

Her experience connects with OdySMA, SMA Europe’s initiative designed to help navigate data and information on access to SMA medicines, care, and healthcare systems across Europe. Just like Gábor’s story http://bit.ly/4o7w2Zd , another inspiring OdySMA journey that sheds light on living with SMA and receiving treatment while on invasive ventilation, Elise’s experience highlights the real impact of fair and inclusive access to treatment and care.

Join us as we listen to Elise’s resilience, joy, and love for learning, proving that while challenges shape our path, they never define our spirit.

Together, . đź’ś

06/10/2025

The Clinical Trials Finder brings all ongoing SMA trial opportunities into one transparent, accessible platform – designed to empower patients, families, clinicians, and researchers worldwide.🌎

Dr. Thomas Doktor, Chair of the Treatment Committee of SMA Europe, explains:
“Clinical trial recruitment has become increasingly complex with the growing number of studies in SMA. By providing transparent and accessible information in one place, we believe this tool will benefit everyone involved – patients, families, clinicians, and researchers alike.”

đź”— Explore the website: http://bit.ly/4gBNl29
đź”— Visit the Q&A subsite: http://bit.ly/46k2PVc

06/10/2025

📢 New Publication!

RARE Revolution Magazine features our Clinical Trials Finder – a global, user-friendly platform to explore ongoing SMA clinical trials in their article “SMA Europe launches new clinical trials finder to support access to clinical trials and accelerate progress in SMA treatment.”

Search studies, get personalised alerts, and access real-time information from around the world. Designed for people with SMA, families, clinicians, and researchers, this website empowers the community and supports faster progress in SMA research.

“Many people with SMA want to participate in research but face barriers. This tool helps overcome them,” says Dr. Nicole Gusset, CEO of SMA Europe.

đź”— Read the article here: http://bit.ly/4mFe3bC
đź”— Access the website here: http://bit.ly/46k2PVc

04/10/2025

Did you know many people with SMA struggle to find clear, up-to-date clinical trial info? Our Clinical Trials Finder solves that — hear from our Patient Advocate & Volunteer, Nadya Karachevtseva.

đź”— Access the website here: http://bit.ly/4gBNl29
đź”— Q&A subsite: http://bit.ly/46k2PVc

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