Last Friday NHS England sent a disappointing response to our letter on access criteria to Spinraza under Expanded Access Programme.
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.
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…
Today TreatSMA sent a reply to the NHS letter received last month that defended the draconian funding restrictions for compassionate access to nusinersen.
Dear Community, After we all partook in sharing the TreatSMA video to raise awareness of SMA, we have been flooded with many questions about how can the community help. The fact is: NHS will not pay this much money for…
PTC Therapeutics informed that the experimental drug RG7916 increased the SMN protein 2.5-fold in SMA type 2 and 3 patients who took part in the SUNFISH clinical trial.
TreatSMA has received a formal response from NHS England to the letter sent by the UK medical community about the Expanded Access Programme of nusinersen.
Today 30/9 the world celebrates SMA Awareness Day. Do you know what SMA stands for?