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.
Below are some the most frequent questions and problems that we are seeing within the Type 1 community. We have compiled a guide based on the evidence from the newly Published Standards of Care, AA diet website and other documents or protocols that are used within the community.
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.