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Sindrome ReNU Italia APS

What is ReNU Syndrome?

A newly identified genetic condition. A globally coordinated research effort.

ReNU Syndrome is caused by pathogenic variants in the RNU4-2 gene, a non-coding RNA gene that is a critical component of the RNA splicing machinery.

Discovery of RNU4-2

RNU4-2 was identified in October 2024 as one of the leading genetic causes of rare neurodevelopmental disorders, affecting approximately 1 in 35,000 live births.

In Italy, Whole Genome Sequencing (WGS) is needed to diagnose RNU4-2. WES cannot detect it!

Many people with ReNU Syndrome exhibit a happy demeanor, are affectionate, and enjoy swings, water, music, and routines.

Ashley, 8 anni, gioca nell'acqua
Ashley, age 8, playing in the water

ReNU Syndrome Features

Brain Abnormalities

Reduced white matter volume, corpus callosum hypoplasia, ventriculomegaly, delayed myelination

Intellectual Disability

Developmental delays, significant limitations in intellectual functioning and adaptive behavior

Epilepsy

Infantile spasms, focal and tonic-clonic seizures, febrile seizures or status epilepticus

Visual Problems

Optic nerve hypoplasia, cortical vision impairment (CVI), strabismus, nystagmus

Facial Features

Myopathic face, epicanthus, wide nasal bridge, anteverted nares, large cupped ears, full cheeks

Muscle Tone

Hypotonia (low muscle tone) or muscle weakness

Mobility

Delayed walking or inability to walk

Growth

Microcephaly, short stature, hypothyroidism or growth hormone deficiency

Feeding

Feeding difficulties, excessive drooling, constipation, gastroesophageal reflux

Communication

Language acquisition difficulties (may develop alternative communication)

Bone Issues

Low bone density, hip dysplasia, recurrent fractures

ReNU Syndrome Support Tool

Download the complete document on the clinical specifics of ReNU Syndrome, prepared by leading world researchers. An essential support for physicians treating ReNU patients.

Download ReNU Support Tool PDF