Parents of children with achondroplasia continue rallying at gov't administration

20:40, 26.04.2023

Parents of children with achondroplasia continue rallying at the government administration. The opposition parties and NGOs also joined today’s protest.

The protesting parents seek to be included in the work of the Rare Diseases Coordination Council, which was earlier given the assignment to create the guideline for the achondroplasia medication Vosoritide before the end of the summer.

Additionally, they urge that the Prime Minister issue a special order outlining certain timelines for the importation of the very drug. One of the rally attendees, Lia Shalvashvii, stated, “This decree will be the most important document for us, which we trust and rely on.”

“A national guideline will be released at the end of May, and I welcome it without a doubt, but for now, we are asking that parents participate in the council’s work. The Ministry made a commitment, but nothing happened. We weren’t invited to the Council today,” Shalvashvili continued.

By - Marika Kartozia

Society

children with achondroplasia

rally at gov't administration

Vosoritide