Croatia: Petition gathers 40,000 signatures for rare skin disease treatment

A petition in Croatia has collected 40,000 signatures in five days, calling for the inclusion of a new gene therapy, Vyjuvek, on the Croatian Health Insurance Fund (HZZO) basic drug list. The initiative seeks to provide access to treatment for children suffering from recessive dystrophic epidermolysis bullosa, a rare genetic condition often referred to as butterfly skin disease.

Individuals with this condition have extremely fragile skin where even minor friction can cause painful blisters and open wounds. The Vyjuvek therapy, developed by a team led by Dr. M. Peter Marinkovic, is applied directly to wounds to encourage the production of collagen, helping to bind skin layers together. While the therapy has been approved in the United States and the European Union, and is used in countries such as Slovenia, Serbia, Switzerland, France, Germany, and Spain, it is not yet available through the standard HZZO list in Croatia.

Parents of affected children are urging authorities to use existing legal and regulatory mechanisms to ensure access to the treatment while the formal inclusion process is finalized.