Most Parents Surveyed in Japan Support SMA Newborn Screening
Despite being mostly unaware of spinal muscular atrophy (SMA), most Japanese parents support newborn screening for the disease, according to data from a small survey-based study. The most cited reasons behind this support included the importance of early diagnosis and...
Register Now for Global Genes’ RARE Patient Advocacy Summit
Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll...
SMA Type 1 Affects Sensory Nerves as Children Age, Small Study Shows
Sensory nerves — those responsible for transmitting sensory information — are progressively damaged in children with spinal muscular atrophy (SMA) type 1 as these patients age, according to a small study in Italy. Importantly, major functional deficits in the sensory...
Two Brothers Making the Most Out of Life With SMA
Participate in a paintball war. Meet Snoop Dogg. Be the first disabled person to go to space. These are just a few of the 40-plus items on Zarek DeMarco Elizondo’s bucket list. With his older brother, Zachary Markel Elizondo, by his side, Zarek, who has spinal...
NORD Rare Disease Summit, Online Oct. 18-19, Open for Registration
Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to...HCP — SMA News Today
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