Author: Marni Smyth
Physio with Marion – Treatment Goals
Today Marion discussed how to achieve goals you set yourself whilst receiving treatment.
Physio with Marion – Equipment p.2
Today Marion discussed Equipment. This is part 2 of her talk as is proved so popular!
Physio with Marion, Pandemic Special – Back to School
Today Marion discussed going back to school during the Covid-19 pandemic
NICE Announce a Review of the MAA Guidance for Spinraza
NICE have announced they are going to review the MAA Guidance for Spinraza in regards to Type 3 patients.
Survey to explore the experiences of people who are on Risdiplam.
TreatSMA is asking for help from those that are receiving Risdiplam. We desperately need you to fill in this questionnaire on behalf of yourself or your child to help us in our fight to access Risdiplam here in the UK.
Biogen Release a Community Update
This is a community update from Biogen on the efficacy of Spinraza in patients with SMA Type 2 and 3. Positive improvement were seen in both Types. For more details please see below. Biogen Community Update
Survey on Access to Treatment for Spinal Muscular Atrophy
SMA Community, TreatSMA needs you! In October we make our Patient Advocate submission as part of the NICE appraisal for Risdiplam. Therefore we need to continue to collect data in order to strengthen our fight.
Roche presents new 2-year data for Evrysdi (risdiplam) in infants with Type 1 spinal muscular atrophy (SMA)
Roche presents new 2-year data for Evrysdi (risdiplam) in infants with Type 1 spinal muscular atrophy (SMA)