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rare-disease

5 stories related to this topic, newest first.

Genetic test identifies rare disorder after 18 years of symptomsfoxnews.com
world6 days ago

Genetic test identifies rare disorder after 18 years of symptoms

A young woman received a diagnosis of PPP2R5D-associated neurodevelopmental disorder, also known as Jordan syndrome, following whole genome sequencing at a Cleveland Clinic clinic. The condition had previously been misidentified through multiple other labels. Fewer than 500 cases…

Cbs News
1 source
Scientists Link Boy’s Brain Tumor to Gene Therapy VirusesStat
science15 days agoDeveloping

Scientists Link Boy’s Brain Tumor to Gene Therapy Viruses

A 13-month-old boy with a rare disease received an experimental gene therapy after his stem cell transplant failed. A routine scan later revealed a golf-ball-sized tumor on his brain. Scientists have linked the tumor to viruses used in the gene therapy, according to a STAT report…

Stat
1 source
Scientists Link Boy’s Brain Tumor to Gene Therapy VirusesStat
health16 days agoDeveloping

Scientists Link Boy’s Brain Tumor to Gene Therapy Viruses

Doctors identified a link between a gene therapy treatment and a brain tumor in a young patient with a rare disease. The case is described as rare, with medical professionals stating that treatment risks must be weighed against benefits. The patient had previously undergone a ste…

Stat
1 source
Entrada Duchenne Therapy Falls Short in Early Trialprnewswire.com
science22 days agoDeveloping

Entrada Duchenne Therapy Falls Short in Early Trial

Entrada Therapeutics reported that its next-generation exon-skipping drug for Duchenne muscular dystrophy did not meet expectations in an early-stage study. The company is among several developing improved treatments aimed at increasing functional dystrophin production in patient…

Stat
1 source
Four-Year-Old Girl Regains Ability to Walk After Rare Brain Disease DiagnosisSubstrate placeholder — needs review
world47 days ago

Four-Year-Old Girl Regains Ability to Walk After Rare Brain Disease Diagnosis

A four-year-old girl named Sienna has recovered the ability to walk following a diagnosis of acute necrotising encephalitis in November. Her father, Gary Dunion, reported that she spent five weeks in intensive care and has since progressed to walking unsupported. Community fundra…

The Bbc
1 source