Parents of children with Duchenne muscular dystrophy have spent the 17th night outside the government administration, 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 the import of treatments such as Vamorolone, Givinostat, exon-skipping therapies and Elevidys, which are authorized by the US Food and Drug Administration and the European Medicines Agency. They say they have been seeking access to these medicines in Georgia for the past year and a half without success.
The Ministry of Health of Georgia says there are still unresolved questions regarding 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 drug that can be considered a cure for Duchenne muscular dystrophy.
Duchenne muscular dystrophy is a rare genetic disorder that causes progressive muscle degeneration, primarily affecting children.
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