UK’s leading clinicians have published an open letter in The Guardian, urging the health authorities to provide access to Spinraza treatment.
An estimated 30 to 40 thousand people with spinal muscular atrophy will soon have access to the first-ever effective treatment for this life-limiting disorder as China’s health authorities granted marketing authorisation to nusinersen (Spinraza®).
Thousands of people are taking to streets across Croatia. The reason is that Spinraza, the life-saving treatment for spinal muscular atrophy, is not available there for adults living with SMA.
Health authorities in Turkey decided to offer Spinraza as a standard therapy to all people with spinal muscular atrophy.
MP drop-in, House of Commons on 25th February 2019
On Tuesday the 26th the TreatSMA team met the new generation and talked about living with rare diseases like SMA.