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.
Official reaction: SMA Ireland applauds the decision to include Spinal Muscular Atrophy in heel prick test for newborn babies but calls for swift implementation.https://t.co/kEteLdsqXe
— SMA Ireland (@SMAIrelandCom) November 26, 2023
Check out our new InformationHub for everything you need to know about your child going to hospital and finding supports.
— Children in Hospital (@childreninhosp) November 6, 2023
Visit https://t.co/GnSeWU2JVi pic.twitter.com/IYp1w58KBQ
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