Petition to get Newborn Screening funded immediately for Spinal Muscular Atrophy
A petition has been set up to get Newborn Screening funded immediately for Spinal Muscular Atrophy.
NICE Release Statement on Risdiplam
Earlier today NICE released a statement regarding Risdiplam. NICE’s initial response is to say ‘no’ to funding Risdiplam.
Sibs: Camp in the Cloud for siblings and their families
A SMA community member has sent us the following information, they thought it would be useful for the SMA community.
Zolgensma Q&A
We have received further information from NHSE on Zolgensma. We will continue to update you all as we receive information. Please follow link below for the Q&A. Zolgensma Q and As
NHSE announce Zolgensma treatment centres
We are please to share communication from NHSE about the progress regarding access to Zolgensma. The selection of the four centres which will be administering the treatment has been completed.
Guidance released by Clinical Panel regarding accessing Nusinersen (Spinraza) out of area
A document has been released by the Clinical Panel regarding accessing Nusinersen (Spinraza) out of area. You can read the full document below. Please note this information is for England only. Nusinersen referrals guidance FINAL
Rebels win Spinraza battle – everybody can now experience the force
So it’s officially Star Wars day, those of you who haven’t woken up fully or have no idea what we are talking about, May the 4th is referred to by many geeks as Star Wars day due to the phrase made famous by the series, “may the force be with you”.