SMA Europe
@sma-europe.bsky.social
SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. All together. One goal.
Visit our website: https://www.sma-europe.eu/
Visit our website: https://www.sma-europe.eu/
Pinned
SMA Europe
@sma-europe.bsky.social
· Jun 18
📣 5th International Scientific Congress on SMA: registration opens today! 🔬 The event will take place from 11th to 14th March 2026 in Budapest, Hungary. Visit https://congress.sma-europe.eu/ to learn more #spinalmuscularatrophy #research #raredisease
“It’s not just an organisation — it’s a community full of people who care deeply.” — Anush 🇦🇲 This is what makes SMA Europe special. 💙
Happy #VolunteerDay to all who inspire, connect, and lead with empathy. 💫
#WeAreOne #Community #Inclusion
Happy #VolunteerDay to all who inspire, connect, and lead with empathy. 💫
#WeAreOne #Community #Inclusion
December 5, 2025 at 2:03 PM
“It’s not just an organisation — it’s a community full of people who care deeply.” — Anush 🇦🇲 This is what makes SMA Europe special. 💙
Happy #VolunteerDay to all who inspire, connect, and lead with empathy. 💫
#WeAreOne #Community #Inclusion
Happy #VolunteerDay to all who inspire, connect, and lead with empathy. 💫
#WeAreOne #Community #Inclusion
Every volunteer makes a difference at SMA Europe. 💙 “It’s where I feel my voice is heard.” — Jane 🇲🇰 Your empathy and dedication make our community thrive. Together, we are stronger. 💫
#SMAEurope #WeAreOne #YouthVoices #VolunteerDay
#SMAEurope #WeAreOne #YouthVoices #VolunteerDay
December 5, 2025 at 11:32 AM
Every volunteer makes a difference at SMA Europe. 💙 “It’s where I feel my voice is heard.” — Jane 🇲🇰 Your empathy and dedication make our community thrive. Together, we are stronger. 💫
#SMAEurope #WeAreOne #YouthVoices #VolunteerDay
#SMAEurope #WeAreOne #YouthVoices #VolunteerDay
Being a volunteer at SMA Europe means being part of a family built on care and trust. 💙 “No one is left behind.” — Ayça 🇹🇷
Thank you to our volunteers for your kindness and strength. Together, #WeAreOne 💫
#SMAEurope #Community #Inclusion #InternationalVolunteerDay
Thank you to our volunteers for your kindness and strength. Together, #WeAreOne 💫
#SMAEurope #Community #Inclusion #InternationalVolunteerDay
December 5, 2025 at 9:31 AM
Being a volunteer at SMA Europe means being part of a family built on care and trust. 💙 “No one is left behind.” — Ayça 🇹🇷
Thank you to our volunteers for your kindness and strength. Together, #WeAreOne 💫
#SMAEurope #Community #Inclusion #InternationalVolunteerDay
Thank you to our volunteers for your kindness and strength. Together, #WeAreOne 💫
#SMAEurope #Community #Inclusion #InternationalVolunteerDay
This #InternationalDayofPersonswithDisabilities, we acknowledge, raise awareness, and advocate — not celebrate.
“There’s still so much to do, so much to be aware of.” — Seda 🇹🇷
Let’s break barriers and make inclusion a reality. ♿💜
#WeAreOne #SMAEurope #Inclusion #Accessibility
“There’s still so much to do, so much to be aware of.” — Seda 🇹🇷
Let’s break barriers and make inclusion a reality. ♿💜
#WeAreOne #SMAEurope #Inclusion #Accessibility
December 3, 2025 at 1:04 PM
This #InternationalDayofPersonswithDisabilities, we acknowledge, raise awareness, and advocate — not celebrate.
“There’s still so much to do, so much to be aware of.” — Seda 🇹🇷
Let’s break barriers and make inclusion a reality. ♿💜
#WeAreOne #SMAEurope #Inclusion #Accessibility
“There’s still so much to do, so much to be aware of.” — Seda 🇹🇷
Let’s break barriers and make inclusion a reality. ♿💜
#WeAreOne #SMAEurope #Inclusion #Accessibility
This #InternationalDayofPersonswithDisabilities, reminds us: barriers belong in the past. ♿💙
“Disabilities don’t limit us. Old-fashioned attitudes do.” — Simona 🇲🇰
Together, #WeAreOne.
#SMAEurope #Inclusion #Accessibility
“Disabilities don’t limit us. Old-fashioned attitudes do.” — Simona 🇲🇰
Together, #WeAreOne.
#SMAEurope #Inclusion #Accessibility
December 3, 2025 at 10:31 AM
This #InternationalDayofPersonswithDisabilities, reminds us: barriers belong in the past. ♿💙
“Disabilities don’t limit us. Old-fashioned attitudes do.” — Simona 🇲🇰
Together, #WeAreOne.
#SMAEurope #Inclusion #Accessibility
“Disabilities don’t limit us. Old-fashioned attitudes do.” — Simona 🇲🇰
Together, #WeAreOne.
#SMAEurope #Inclusion #Accessibility
💡 Did you know? 87.1% of people in our EUPESMA survey said they would participate in a clinical trial! Read the full publication now! https://heyzine.com/flip-book/9c8efc8e88.html
#SMAEurope #OneGoal #EUPESMA #PatientVoice #ClinicalTrials #SMACommunity #PatientCentric
#SMAEurope #OneGoal #EUPESMA #PatientVoice #ClinicalTrials #SMACommunity #PatientCentric
November 27, 2025 at 12:01 PM
💡 Did you know? 87.1% of people in our EUPESMA survey said they would participate in a clinical trial! Read the full publication now! https://heyzine.com/flip-book/9c8efc8e88.html
#SMAEurope #OneGoal #EUPESMA #PatientVoice #ClinicalTrials #SMACommunity #PatientCentric
#SMAEurope #OneGoal #EUPESMA #PatientVoice #ClinicalTrials #SMACommunity #PatientCentric
Did you know that 98% of the people living with SMA who participated in our EUPESMA survey stated that there is a need for new clinical trials? Read now our latest publication “Together we prioritise. Results from EUPESMA on Clinical Trial Participation” https://heyzine.com/flip-book/9c8efc8e88.html
November 25, 2025 at 12:03 PM
Did you know that 98% of the people living with SMA who participated in our EUPESMA survey stated that there is a need for new clinical trials? Read now our latest publication “Together we prioritise. Results from EUPESMA on Clinical Trial Participation” https://heyzine.com/flip-book/9c8efc8e88.html
Breaking News! 📣🧬 Today, Novartis announced that the company has received the FDA approval for Itvisma® (onasemnogene abeparvovec-brve. In Europe, the therapy is currently undergoing a Joint Clinical Assessment, with results expected in mid-2026 https://bit.ly/4pzd5Qb #spinalmuscularatrophy
November 25, 2025 at 8:40 AM
Breaking News! 📣🧬 Today, Novartis announced that the company has received the FDA approval for Itvisma® (onasemnogene abeparvovec-brve. In Europe, the therapy is currently undergoing a Joint Clinical Assessment, with results expected in mid-2026 https://bit.ly/4pzd5Qb #spinalmuscularatrophy
Workshop registration is OPEN! 🙌 Join us on 11 March 2026 for two workshop sessions at the 5th International Scientific Congress on SMA
🟣 Limited seats — first come, first served!
Register: congress.sma-europe.eu/workshop 💜
#SMAEurope #SMAcongress
🟣 Limited seats — first come, first served!
Register: congress.sma-europe.eu/workshop 💜
#SMAEurope #SMAcongress
November 21, 2025 at 2:31 PM
Workshop registration is OPEN! 🙌 Join us on 11 March 2026 for two workshop sessions at the 5th International Scientific Congress on SMA
🟣 Limited seats — first come, first served!
Register: congress.sma-europe.eu/workshop 💜
#SMAEurope #SMAcongress
🟣 Limited seats — first come, first served!
Register: congress.sma-europe.eu/workshop 💜
#SMAEurope #SMAcongress
📣 We’re very excited to launch the newest publication in SMA Europe’s One Goal editorial series! 🥳 Together We Prioritise: Results from EUPESMA on Clinical Trial Participation. https://heyzine.com/flip-book/9c8efc8e88.html #SMAEurope #OneGoal #EUPESMA #PatientVoice #ClinicalTrials #SMACommunity
November 20, 2025 at 11:31 AM
📣 We’re very excited to launch the newest publication in SMA Europe’s One Goal editorial series! 🥳 Together We Prioritise: Results from EUPESMA on Clinical Trial Participation. https://heyzine.com/flip-book/9c8efc8e88.html #SMAEurope #OneGoal #EUPESMA #PatientVoice #ClinicalTrials #SMACommunity
Community Update! Biogen announced that the high dose regimen of nusinersen received a positive opinion from the Committee for Medicinal Products for Human Use (CHMP) of EMA. https://investors.biogen.com/news-releases/news-release-details/high-dose-regimen-nusinersen-receives-positive-chmp-opinion
November 17, 2025 at 3:31 PM
Community Update! Biogen announced that the high dose regimen of nusinersen received a positive opinion from the Committee for Medicinal Products for Human Use (CHMP) of EMA. https://investors.biogen.com/news-releases/news-release-details/high-dose-regimen-nusinersen-receives-positive-chmp-opinion
Happy #WorldScienceDay! 🧬🌍
Thomas Doktor, PhD, Chair of the Treatment Committee at SMA Europe, reminds us: “Science builds bridges between people, ideas, and possibilities,”
Let’s keep connecting the dots for progress, equality, and hope. 💫
#SMAEurope #WeAreOne #Research #Inclusion #SMA
Thomas Doktor, PhD, Chair of the Treatment Committee at SMA Europe, reminds us: “Science builds bridges between people, ideas, and possibilities,”
Let’s keep connecting the dots for progress, equality, and hope. 💫
#SMAEurope #WeAreOne #Research #Inclusion #SMA
November 10, 2025 at 10:05 AM
Happy #WorldScienceDay! 🧬🌍
Thomas Doktor, PhD, Chair of the Treatment Committee at SMA Europe, reminds us: “Science builds bridges between people, ideas, and possibilities,”
Let’s keep connecting the dots for progress, equality, and hope. 💫
#SMAEurope #WeAreOne #Research #Inclusion #SMA
Thomas Doktor, PhD, Chair of the Treatment Committee at SMA Europe, reminds us: “Science builds bridges between people, ideas, and possibilities,”
Let’s keep connecting the dots for progress, equality, and hope. 💫
#SMAEurope #WeAreOne #Research #Inclusion #SMA
Between 27 and 30 October, our SMA Europe Staff Team gathered in Freiburg, Germany. 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.
All together. One goal. 💫
#SMAEurope #WeAreOne
All together. One goal. 💫
#SMAEurope #WeAreOne
November 7, 2025 at 10:02 AM
Between 27 and 30 October, our SMA Europe Staff Team gathered in Freiburg, Germany. 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.
All together. One goal. 💫
#SMAEurope #WeAreOne
All together. One goal. 💫
#SMAEurope #WeAreOne
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.
🔗http://bit.ly/4gBNl29
🔗http://bit.ly/46k2PVc
#SMA #ClinicalTrials #SMA #WeAreOne
"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.
🔗http://bit.ly/4gBNl29
🔗http://bit.ly/46k2PVc
#SMA #ClinicalTrials #SMA #WeAreOne
November 4, 2025 at 9:02 AM
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.
🔗http://bit.ly/4gBNl29
🔗http://bit.ly/46k2PVc
#SMA #ClinicalTrials #SMA #WeAreOne
"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.
🔗http://bit.ly/4gBNl29
🔗http://bit.ly/46k2PVc
#SMA #ClinicalTrials #SMA #WeAreOne
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.
🔗 http://bit.ly/4gBNl29
🔗 http://bit.ly/46k2PVc
“For us, knowledge really is power. Staying informed about new treatments can make all the difference.” Elise from our Youth Group in The Netherlands.
🔗 http://bit.ly/4gBNl29
🔗 http://bit.ly/46k2PVc
October 28, 2025 at 10:31 AM
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.
🔗 http://bit.ly/4gBNl29
🔗 http://bit.ly/46k2PVc
“For us, knowledge really is power. Staying informed about new treatments can make all the difference.” Elise from our Youth Group in The Netherlands.
🔗 http://bit.ly/4gBNl29
🔗 http://bit.ly/46k2PVc
Still haven’t checked 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 Greece.
🔗 http://bit.ly/4gBNl29
🔗 http://bit.ly/46k2PVc
#SMA #ClinicalTrials #PatientAdvocacy #WeAreOne #smawareness
🔗 http://bit.ly/4gBNl29
🔗 http://bit.ly/46k2PVc
#SMA #ClinicalTrials #PatientAdvocacy #WeAreOne #smawareness
October 22, 2025 at 8:02 AM
Still haven’t checked 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 Greece.
🔗 http://bit.ly/4gBNl29
🔗 http://bit.ly/46k2PVc
#SMA #ClinicalTrials #PatientAdvocacy #WeAreOne #smawareness
🔗 http://bit.ly/4gBNl29
🔗 http://bit.ly/46k2PVc
#SMA #ClinicalTrials #PatientAdvocacy #WeAreOne #smawareness
New Publication!
Excited to share SMA News Today’s article about our Clinical Trials Finder, SMA Europe’s new tool helping patients, families & clinicians explore SMA trials worldwide — a true “go-to global resource.”
🔗 Read: http://bit.ly/4nQf8yT
Explore: http://bit.ly/4gBNl29
#SMA #WeAreOne
Excited to share SMA News Today’s article about our Clinical Trials Finder, SMA Europe’s new tool helping patients, families & clinicians explore SMA trials worldwide — a true “go-to global resource.”
🔗 Read: http://bit.ly/4nQf8yT
Explore: http://bit.ly/4gBNl29
#SMA #WeAreOne
October 16, 2025 at 10:31 AM
New Publication!
Excited to share SMA News Today’s article about our Clinical Trials Finder, SMA Europe’s new tool helping patients, families & clinicians explore SMA trials worldwide — a true “go-to global resource.”
🔗 Read: http://bit.ly/4nQf8yT
Explore: http://bit.ly/4gBNl29
#SMA #WeAreOne
Excited to share SMA News Today’s article about our Clinical Trials Finder, SMA Europe’s new tool helping patients, families & clinicians explore SMA trials worldwide — a true “go-to global resource.”
🔗 Read: http://bit.ly/4nQf8yT
Explore: http://bit.ly/4gBNl29
#SMA #WeAreOne
Our volunteer, Nadya, 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.
🔗 http://bit.ly/4gBNl29 | 🔗 http://bit.ly/46k2PVc
#SMA #ClinicalTrials #WeAreOne
🔗 http://bit.ly/4gBNl29 | 🔗 http://bit.ly/46k2PVc
#SMA #ClinicalTrials #WeAreOne
October 14, 2025 at 10:02 AM
Our volunteer, Nadya, 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.
🔗 http://bit.ly/4gBNl29 | 🔗 http://bit.ly/46k2PVc
#SMA #ClinicalTrials #WeAreOne
🔗 http://bit.ly/4gBNl29 | 🔗 http://bit.ly/46k2PVc
#SMA #ClinicalTrials #WeAreOne
On 23 Sept, the #NBSAlliance joined MEPs Tomislav Sokol, Sirpa Pietikäinen & Billy Kelleher for “NBS for Rare Diseases: How Can the EU Lead on the Global Stage?” Marie-Christine Ouillade, Chair of the Alliance, shared insights on equitable and timely newborn screening across Europe. #WeAreOne #SMA
October 10, 2025 at 11:02 AM
On 23 Sept, the #NBSAlliance joined MEPs Tomislav Sokol, Sirpa Pietikäinen & Billy Kelleher for “NBS for Rare Diseases: How Can the EU Lead on the Global Stage?” Marie-Christine Ouillade, Chair of the Alliance, shared insights on equitable and timely newborn screening across Europe. #WeAreOne #SMA
SMA Europe Youth SMArt TV’s Episode 7:Elise’s Journey with SMA. Elise, 24, from the Netherlands, shares her story of living with SMA, using ventilation, and embracing life with positivity. Like Gábor’s story http://bit.ly/4o7w2Zd,it highlights access to treatment with any support system. 💜 #WeAreOne
October 9, 2025 at 10:32 AM
SMA Europe Youth SMArt TV’s Episode 7:Elise’s Journey with SMA. Elise, 24, from the Netherlands, shares her story of living with SMA, using ventilation, and embracing life with positivity. Like Gábor’s story http://bit.ly/4o7w2Zd,it highlights access to treatment with any support system. 💜 #WeAreOne
The Clinical Trials Finder brings all ongoing SMA trials into one global, accessible platform. 🌎
“Transparent info in one place benefits everyone,” says Dr. Thomas Doktor, Chair of SMA Europe’s Treatment Committee.
🔗 http://bit.ly/4gBNl29
🔗 http://bit.ly/46k2PVc
#SMA #WeAreOne
“Transparent info in one place benefits everyone,” says Dr. Thomas Doktor, Chair of SMA Europe’s Treatment Committee.
🔗 http://bit.ly/4gBNl29
🔗 http://bit.ly/46k2PVc
#SMA #WeAreOne
October 6, 2025 at 5:02 PM
The Clinical Trials Finder brings all ongoing SMA trials into one global, accessible platform. 🌎
“Transparent info in one place benefits everyone,” says Dr. Thomas Doktor, Chair of SMA Europe’s Treatment Committee.
🔗 http://bit.ly/4gBNl29
🔗 http://bit.ly/46k2PVc
#SMA #WeAreOne
“Transparent info in one place benefits everyone,” says Dr. Thomas Doktor, Chair of SMA Europe’s Treatment Committee.
🔗 http://bit.ly/4gBNl29
🔗 http://bit.ly/46k2PVc
#SMA #WeAreOne
📢 @rarerevolutionmagazine features our Clinical Trials Finder – a global tool to explore SMA trials, set alerts & access real-time updates. Breaking barriers to research participation.
🔗 Article: http://bit.ly/4mFe3bC
🔗 CT Finder: http://bit.ly/46k2PVc
#SMAResearch #WeAreOne #SMA
🔗 Article: http://bit.ly/4mFe3bC
🔗 CT Finder: http://bit.ly/46k2PVc
#SMAResearch #WeAreOne #SMA
October 6, 2025 at 9:02 AM
📢 @rarerevolutionmagazine features our Clinical Trials Finder – a global tool to explore SMA trials, set alerts & access real-time updates. Breaking barriers to research participation.
🔗 Article: http://bit.ly/4mFe3bC
🔗 CT Finder: http://bit.ly/46k2PVc
#SMAResearch #WeAreOne #SMA
🔗 Article: http://bit.ly/4mFe3bC
🔗 CT Finder: http://bit.ly/46k2PVc
#SMAResearch #WeAreOne #SMA
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.
🔗 http://bit.ly/4gBNl29
#SMA #ClinicalTrials #PatientAdvocacy #SMACommunity #WeAreOne
🔗 http://bit.ly/4gBNl29
#SMA #ClinicalTrials #PatientAdvocacy #SMACommunity #WeAreOne
October 4, 2025 at 9:31 AM
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.
🔗 http://bit.ly/4gBNl29
#SMA #ClinicalTrials #PatientAdvocacy #SMACommunity #WeAreOne
🔗 http://bit.ly/4gBNl29
#SMA #ClinicalTrials #PatientAdvocacy #SMACommunity #WeAreOne
Listen to why the Clinical Trials Finder matters, from our Youth Group volunteer Nicole from South Africa. 🥰
🔗 Explore the tool: http://bit.ly/4gBNl29
🔗 Q&A subsite: http://bit.ly/46k2PVc
#SMA #PatientAdvocacy #weareone
🔗 Explore the tool: http://bit.ly/4gBNl29
🔗 Q&A subsite: http://bit.ly/46k2PVc
#SMA #PatientAdvocacy #weareone
October 3, 2025 at 2:32 PM
Listen to why the Clinical Trials Finder matters, from our Youth Group volunteer Nicole from South Africa. 🥰
🔗 Explore the tool: http://bit.ly/4gBNl29
🔗 Q&A subsite: http://bit.ly/46k2PVc
#SMA #PatientAdvocacy #weareone
🔗 Explore the tool: http://bit.ly/4gBNl29
🔗 Q&A subsite: http://bit.ly/46k2PVc
#SMA #PatientAdvocacy #weareone
Elise from our Youth Group in the Netherlands shares why the Clinical Trials Finder is so important!
🔗 Access the website here: http://bit.ly/4gBNl29
🔗 Q&A subsite: http://bit.ly/46k2PVc
#SMA #ClinicalTrials #PatientAdvocacy #SMACommunity #Research #WeAreOne
🔗 Access the website here: http://bit.ly/4gBNl29
🔗 Q&A subsite: http://bit.ly/46k2PVc
#SMA #ClinicalTrials #PatientAdvocacy #SMACommunity #Research #WeAreOne
October 3, 2025 at 8:31 AM
Elise from our Youth Group in the Netherlands shares why the Clinical Trials Finder is so important!
🔗 Access the website here: http://bit.ly/4gBNl29
🔗 Q&A subsite: http://bit.ly/46k2PVc
#SMA #ClinicalTrials #PatientAdvocacy #SMACommunity #Research #WeAreOne
🔗 Access the website here: http://bit.ly/4gBNl29
🔗 Q&A subsite: http://bit.ly/46k2PVc
#SMA #ClinicalTrials #PatientAdvocacy #SMACommunity #Research #WeAreOne