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Help us fundraise to develop gene therapy for Cockayne syndrome – type B.

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Families, doctors, researchers, journalists and donors are all welcome to write. We usually reply within a few working days.

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Viljem Julijan Association

Viljem Julijan Association for Children with Rare Diseases
Cesta Leona Dobrotinška 2
3230 Šentjur
Slovenia, EU

csb@viljem-julijan.si

Day-to-day updates on the campaign are posted on our Facebook page .

Learn more about us

We hope. We care. We unite.

At the Viljem Julijan Association for Children with Rare Diseases we are on a mission to develop gene therapy for Cockayne syndrome – type B, and we are raising funds to support research and development of that therapy.

Our mission was initiated by a young girl, Karolina, who has Cockayne syndrome – type B, and together with her parents we wish to save her life. We have partnered with two research groups in the USA and Portugal, which are developing gene therapy for CSB.

Has your child been diagnosed with Cockayne syndrome?

Join our patient registry so that families, doctors and researchers can work together.