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
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
Extremely grateful to @violetannetd for highlighting outrageous inequality w.r.t. adult access to SMA medicine in IRL. ~20 patients left untreated because of arbitrary @HSELive age-based access ceiling. Unjust, inequitable and unethical. #SMAAdults pic.twitter.com/SLyILlCyFW
— SMA Ireland (@SMAIrelandCom) July 9, 2024