Parents of children with Duchenne syndrome are continuing daily rallies and weekly marches, saying they will not stop until their demands are met.
The parents, representing around 100 children, are calling for access to treatments including Vamorolone, Givinostat, exon-skipping therapies and Elevidys, which are authorised by the US Food and Drug Administration and the European Medicines Agency. They say they have been trying to secure these medicines in Georgia for the past year and a half without success.
The Georgian Ministry of Health says there are still unresolved questions over the safety and effectiveness of the requested medicines, adding that definitive clinical studies have not yet been completed. It also notes that there is currently no cure for Duchenne muscular dystrophy.
Duchenne muscular dystrophy is a rare genetic disorder that causes progressive muscle degeneration, mainly affecting children.
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