In 2021, how many babies were identified with a rare disease as a result of #neonatalscreening ?

ESID IPOPI International Society for Neonatal Screening SMA-Europe

Last week we had the pleasure of hosting representatives from several #NeuromuscularDisease patient advocacy groups, Cure SMA, HereditaryNeuropathy, SMA-Europe and Myasthenia Gravis Foundation of America, at #NMDPharma headquarters in Aarhus, Denmark. Thank you to all for taking the time to share & inspire us.

Kind reminder! 📣🧬 Our Call for Research nr. 12 is now open! 🔬 If you are interested to participate or share, please consult the full information on our website: sma-europe.eu/our-call-for-r… All together. One goal. 🙌 #spinalmuscularatrophy #raredisease #research

New publication! 📣

We are pleased to share with you the following publication: 'NMD Pharma Publishes Comprehensive Data Package for NMD670 in Science Translational Medicine.'  

You can read it here: bit.ly/3vBNGPx

#spinalmuscularatrophy #raredisease #research

We are very happy to share with you the latest interview with Bianca Özcan on Spinal Muscular Atrophy and 4th Scientific International Congress in Ghent, published in Futuremedia News. 📣 

bit.ly/3PYdRXk

#SpinalMuscularAtrophy #RareDisease #research

Thank you for sharing! RARE Revolution Magazine

Gracias por compartirla! 💪🏽

Have you seen it already?📣🧬 Our Call for Research 12 is now open! 🔬 If you are interested to participate or share, please consult the full information on our website: sma-europe.eu/our-call-for-r… All together. One goal. 🙌 #spinalmuscularatrophy #raredisease #research #smaawareness

It's been only a couple of weeks and we miss our SMA community very much already! 😍 The global SMAdvocacy Event brought together 70 patient advocates from 50 countries. We hope to see you all very soon! 🥰 #advocacy #raredisease #spinalmuscularatrophy #research

We are happy to share the latest Community Letter issued by Roche. You can see more here: sma-europe.eu/news/community…

All together. One goal.
#spinalmuscularatrophy #raredisease #treatment #risdiplam

Thank you!!!

📣JOB OFFER!!! Looking for an enthusiastic postdoc researcher to develop a short-term stay in Muscle Biology at the University of La Laguna in Tenerife🌅🇪🇸...We will test different combinatorial therapies in SMA mouse models 🐭🧬 to improve muscle structure and function👨‍🦽🔬.

On Rare Disease Day 2024, SMA-Europe launched: 'Care for adults living with SMA in Europe: a benchmarking report.' This report delivers a comprehensive evaluation of care and support provision for adults living with SMA in 22 SMA Europe member countries👉 odysma.sma-europe.eu/adult-care

Thank you for joining us! Moumita_SMA_Mom

Today, Marie-Christine Ouillade, Chair of NBSA Steering Committee, joined ‘Navigating Diagnostics Through the Lens of the Pharmaceutical Package and Beyond’
European Commission, SMA-Europe, Screen4Care,
S. Kympouropoulos
#newbornscreening #spinalmuscularatrophy #raredisease

We cannot believe that our Congress is already over! 📣😍 1000 participants from all over the globe gathered together between 14 and 16 of March at our 4th Scientific International Congress on Spinal Muscular Atrophy. All together. One goal. Tom Gillingwater #SMACongress2024

Veeee ilk poster sunumum! Hem kendisi SMA hastası hem de SMA ile ilgili tez çalışması yapan bir doktora öğrencisi olarak bir SMA Kongresi'nde poster sunmak çok özeldi benim için.

I gave my first poster presentation at the #SMACongress2024 , organized by SMA-Europe. As being both an SMA patient and doing research about my very own disease, I believe I am redefining the 'rare'. Huge thanks to my family and my thesis advisor. ❤

Thank you for joining us!