ReNU Syndrome United

ReNU Syndrome United is the patient advocacy group working to “ReNU Hope” and build community, raise awareness, and advance research for therapeutic options for children and adults affected by ReNU syndrome. The organization was founded in 2024 following the groundbreaking discovery of highly prevalent de novo genetic variants on the non-protein coding RNU4-2 gene. While this discovery is new, experts expect that there are over 100,000 individuals currently living with this condition. ReNU syndrome is characterized by multi-system symptoms and disabilities, including intellectual disability, epilepsy, osteoporosis, global developmental delays, feeding issues, dysautonomia, absent speech, slow growth, microcephaly, autism, and vision issues.