We don’t normally do blog posts of this nature, but we felt that this particular piece of assistive technology is so good that we wanted to share it with the community.
A petition has been set up to get Newborn Screening funded immediately for Spinal Muscular Atrophy.
Earlier today NICE released a statement regarding Risdiplam. NICE’s initial response is to say ‘no’ to funding Risdiplam.
A SMA community member has sent us the following information, they thought it would be useful for the SMA community.
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
Today the MHRA have approved the licence for Risdiplam.
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.
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