Author: TreatSMA
Important survey
This is important! If we are to get Spinraza, we must work hard to get it. Please complete this survey.
Poland says YES to Spinraza
Spinraza is to be made available through the national health care in Poland
Biogen replies to our letter
Biogen’s response to our letter on access to treatment for newly diagnosed babies.
Novartis announces FDA filing acceptance and Priority Review of AVXS-101
Novartis announces FDA filing acceptance and Priority Review of AVXS-101, a one-time treatment designed to address the genetic root cause of SMA Type 1
Another letter to speed up the process
Today all the UK SMA groups sent another letter to NICE, asking for the process to be sped up.
SRK-015 receives orphan designation in the EU
SRK-015, a muscle-enhancing experimental drug for SMA, has received orphan designation in the EU.
Delays in access to treatment: The SMA Community sends letters to key stakeholders
TreatSMA along with two other charities sent letters to the key stakeholders in the process: NHS England, NICE and Biogen UK.
NICE shares an update on Spinraza appraisal
Today NICE updated us on Spinraza appraisal. The discussions are ongoing, and we need to stay patient.