GeneH at the Viljem Julijan Charity Concert for Children with Rare Diseases
On Sunday, 13 September 2026, the eighth major Viljem Julijan charity concert for children with rare diseases took place at Tivoli Hall in Ljubljana. Bringing together several musicians, supporters and visitors, the event raised an outstanding EUR 103,569 to support the young patients and their families. Representatives of the Regional Development Agency of the Ljubljana Urban Region (RRA LUR) also attended the concert as partners of the European GeneH project.
Photo: Viljem Julijan
The Viljem Julijan charity concert and the GeneH project share a common goal. While the Viljem Julijan Association supports children with rare diseases and their families through extensive charitable and awareness-raising activities, GeneH systematically brings together European research institutions, healthcare professionals, industry, decision-makers and the wider public, with the central aim of accelerating the development of gene therapies and improving access to them. One of GeneH’s key strengths lies in directly connecting all those concerned with these issues – from affected children and their parents to doctors, researchers and supporters – placing the project among the most advanced initiatives in this field.
It was precisely this shared commitment to improving treatment options and access to treatment that led us to agree with the concert organisers to present the GeneH project to visitors at the event. Information leaflets were available at the venue, introducing the project, its objectives and the importance of developing new treatment options for rare genetic diseases.
For RRA LUR, participation in the charity concert was also an opportunity to contribute, as a GeneH project partner, to raising awareness of rare diseases and highlighting the importance of cooperation between science, healthcare, patients and society as a whole.
