An event dedicated to the situation of SMA Families will take place on 25th February in the Parliament. Please invite your MP!
We are extremely happy to share the long-awaited news: the Scottish government will be making Spinraza available to all people with spinal muscular atrophy in Scotland.
For the third time a drug appraisal committee of the National Institute for Health and Care Excellence will meet to review the nusinersen (Spinraza) dossier. The meeting will take place on the 6 March in Manchester.
In the view of recent NHS plan we once again contacted NHS, Government and NICE highlighting that no significant changes in the policy has been made to accommodate rare diseases. The letter shows our frustration with the system and was…
This is important! If we are to get Spinraza, we must work hard to get it. Please complete this survey.
Today, the Polish minister for health announced that Spinraza will be available through the national health care in Poland.