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)
St George’s Hospital, London is now treating Adults with SMA who are eligible under the MAA for Spinraza
We are happy to update that St George's Hospital in London is now treating Adults with SMA who are eligible under the managed access agreement with Nusinersen. If anyone in their area would like more information please see website (https://www.stgeorges.nhs.uk/service/neuro/neurology/neuromuscular-disorders/spinal-muscular-atrophy-service)
Survey exploring access to Standards of Care for people with Spinal Muscular Atrophy (SMA)
As part of a PhD project, the John Walton Muscular Dystrophy Research Centre in Newcastle are conducting a survey to explore access to Standards of Care for people with Spinal Muscular Atrophy (SMA). They have asked us to spread the…
Roche Answers Questions from The Patient Group on the UK Early Access to Medicines Scheme for Risdiplam
This information is provided in response to a series of questions shared jointly with Roche in writing by UK patient organisations Muscular Dystrophy UK (MDUK), TreatSMA and SMA UK. Unless otherwise stated this information applies to people living across the UK.
MHRA approve risdiplam EAMS application
We currently have limited information but we wanted to get news out to you as soon as possible. The MHRA have approved the use of risdiplam for type 1 and type 2 patients over the age of two months with no upper age limit.
TreatSMA still making noise about treatments thanks to George and Lucy
George and Lucy were featured in this week’s Sunday Mail, one of the largest newspapers and websites in the world reminding everybody about the benefits of treatment and that TreatSMA continues to publicise and fight for treatments to be available.