The story of ANNA
Anna
I am an AKU-patient from Slovakia and a participant of SONIA2 clinical trial (age 61). I was very happy and healthier with nitisinon during SONIA2 but my treatment has been cut off because of high price of this orphan drug now. Pre-approval process seems to be too long for the AKU-patients to get nitisinon again. There are 30 disappointed SONIA2 patients, members of Black Bone Club in Slovakia at least.
(DONATE Black Bone Club in Slovakia, [email protected])
Watch the doc-film below:
https://www.youtube.com/watch?v=3LCEY7w3JDg&t=6s