Viljem Julijan Association for Children with Rare Diseases

Founded in 2018, Viljem Julijan Association for Children with Rare Diseases is a non-profit association based in Šentjur, Slovenia working on health, medical research, children & youth +1 more.

A registered non-profit charity based in Slovenia that supports children with rare diseases and their families. Established in 2018 by parents who lost their son to a rare genetic disease, the association focuses on Cockayne syndrome type B. It funds gene therapy research with research groups in the United States and Portugal, runs family support activities such as retreats, workshops and social events, and maintains a patient registry. It also works to raise awareness of rare diseases and to connect families with medical professionals.