Following our post in April 2024 regarding the concerning and emerging situation with access in the UK to the first global proven truly effective therapy for MND, Tofersen for inherited genetic SOD1 MND, the MND Association have now started a campaign.
This includes a petition to raise awareness of the refusal by NICE to allow Biogen to submit their application for UK marketing under what is considered the most appropriate pathway.
You can read about the campaign, and sign the petition here.
Along with the UK MND Research Institute, #united2endmnd fully supports the approval NOW of Tofersen and urge both NICE and Biogen to thrash out the steps to facilitate approval as soon as possible. NICE are effectively claiming that the treatment is NOT value for money.
Importantly, Tofersen has been shown to be effective in over 5 years of trials. This is NOT an unproven treatment.
Please consider signing the petition and sharing.
We are United2EndMND - Changing the conversation 