SMA-Europe
@SMAEurope
SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. All together. One goal.
ID:423345947
http://www.sma-europe.eu 28-11-2011 11:38:36
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El 13 de mayo finaliza el plazo para presentar proyectos a la Convocatoria de Investigación de SMA-Europe .
FundAME aportó 80.000€ a esta convocatoria, gracias a las donaciones y a nuestros socios. fundame.net/12-convocatori… #Investigación #StopAME
🚨Helps us recruit participants for our study exploring the effects of Neurostimulation ⚡️🧠 to improve motor function in people with Spinal Muscular Atrophy (SMA)!! Help us beat paralysis 💪SMA-Europe SMA Foundation Genentech University of Pittsburgh RNEL UPMC Physician Resources Pitt Neurosurgery
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
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
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
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