NICE will appraise Spinraza for all those with SMA!
The National Institute for Health and Care Excellence (NICE) announced that it will appraise Spinraza as a treatment for all those with spinal muscular atrophy.
UK campaign for access to treatments and support for those with spinal muscular atrophy
BLOG ARCHIVE
Google deprived TreatSMA of access to email and data
Google has blocked the email system used by TreatSMA and paralysed our work.
Demand that Biogen reduces Spinraza price!
Demand that Biogen reduces Spinraza price!
An urgent request to SMA Families living in Scotland
SMA Families living in Scotland are requested to reach out to SMA Support UK in order to take part in an important survey on nusinersen treatment.
Response from NHS England
NHS England sent a disappointing response to the our Community’s letter on access to Spinraza EAP.
Letter to NHS England from the medical and patient communities
Efforts continue on bringing about changes to the NHS commissioning policy on nusinersen. Last night almost 40 clinicians and the four UK SMA groups sent another letter to NHS England. The letter underlined our position that nusinersen treatment under the Expanded Access Programme should be provided to all those who have type 1 SMA.
Letter to NHS England from the medical and patient communities
Efforts continue on bringing about changes to the NHS commissioning policy on nusinersen. Last night almost 40 clinicians and the four UK SMA groups sent another letter to NHS England. The letter underlined our position that nusinersen treatment under the Expanded Access Programme should be provided to all those who have type 1 SMA.
To Whom It May Concern
I wish you knew the turmoil my heart is in with every single waking beat. I wish you felt the lump in my throat caused by the overwhelming fear of defeat. I wish you saw what I see when I look into my child’s eyes And how beautiful, innocent and pure they are that you…
To Whom It May Concern
I wish you knew the turmoil my heart is in with every single waking beat. I wish you felt the lump in my throat caused by the overwhelming fear of defeat. I wish you saw what I see when I look into my child’s eyes And how beautiful, innocent and pure they are that you…