The Voice of
Spinal Muscular Atrophy
in Ireland
The Voice of
Spinal Muscular Atrophy
in Ireland
Spinal Muscular Atrophy
in Ireland
Get involved
Europewide SMA survey
SMA Ireland has been working with SMA Europe advocating for better access to treatment and care for people living with SMA.
As part of this important project SMA Europe have launched a Europewide survey to gain understanding of things like nutrition, physiotherapy and treatment.
SMA Around the world
Some positive vibes! Meet our young member Rose, who has SMA Type I, and started receiving Spinraza in March 2018. Spinraza is a treatment for SMA and is approved for u18s in Ireland. Rose has made great progress since starting treatment and we are so delighted! #sma #spinraza pic.twitter.com/3DH9qGOHRE
— SMA Ireland (@SMAIrelandCom) February 6, 2021
28 June marks Intl Neonatal Screening Day. Retweet and help @SMAIrelandCom raise awareness and have #SMA added to the heel prick test for newborn babies in Ireland. @Screen4Rare @INSD_S4R @RareDiseasesIE @SMAEurope #BringSMAtoHeel pic.twitter.com/eQneYmkWeh
— SMA Ireland (@SMAIrelandCom) June 21, 2022
Today saw first Irish #SMA baby received #Zolgensma since treatment was approved by @INFO_NCPE @roinnslainte following https://t.co/aePFcRvaWj negotiations. Fantastic! @SMAEurope @RareDiseasesIE pic.twitter.com/l5nrqh71Y9
— SMA Ireland (@SMAIrelandCom) December 9, 2021