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
SMA Ireland welcomes reimbursement of Evrysdi in IRL, but regrets arbitrary 18yo age cap. This excludes ~16 adults, without assessment of medical need. The addition of a third SMA medicine is good, but we must have equal access for ALL. @RareDiseasesIE https://t.co/2KzGZU6FdL
— SMA Ireland (@SMAIrelandCom) September 1, 2023
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