About Viljem Julijan Association for Children with Rare Diseases

Viljem Julijan Association for Children with Rare Diseases is a registered non-profit charity organization from Slovenia, European Union. It was established in 2018 by Gregor Bezenšek (musician SoulGreg Artist) and his wife Nina, parents of a boy Viljem Julijan who in 2019 died from the rare genetic disease GM1 gangliosidosis.

Viljem Julijan Association is a beacon of hope and support for children and their families who are facing the challenging journey of rare diseases. Founded in loving memory of Viljem Julijan, a brave little soul who battled a rare disease, the association has grown into a vital community resource, dedicated to improving the quality of life for children afflicted with rare conditions and their families.

Our mission

Our mission is to provide comprehensive support, including emotional, informational, and financial assistance, to families affected by rare diseases. We understand the profound impact these conditions can have on the entire family, which is why our approach is holistic and family-centered. Through our efforts, we aim to raise awareness about rare diseases, advocate for improved medical and social care, and fund research initiatives that promise better treatments and, ultimately, cures.

The Viljem Julijan Association is more than just an organization; it’s a community where families find understanding, strength, and hope. Our initiatives include organizing family retreats, educational workshops, and social events that offer respite and joy to children and their loved ones. Furthermore, we tirelessly work to bridge the gap between medical professionals and families, ensuring that the voices of those affected by rare diseases are heard and considered in the healthcare landscape.

Gene therapy for Cockayne syndrome type B

With our fundraising campaign for the development of gene therapy for Cockayne syndrome type B, we invite you to join us in making a significant difference in the lives of these extraordinary children and their families. Your contribution directly supports research work done by scientists in the USA and Portugal.

The campaign was initiated by Karolina, a little girl with Cockayne syndrome type B, and her parents. Learn more about our mission and Karolina’s story.

Stand with us in this noble cause, for every child deserves the chance to thrive.