Activities Underway for Newborn Screening Awareness Month
As it does each September during Newborn Screening Awareness Month, Baby’s First Test is sharing information and stories that…
Articles by Mary Chapman
New EU Alliance Seeks SMA Newborn Screening Across Europe by 2025
SMA Europe has launched an alliance that is demanding that, by 2025, newborn screening programs in Europe include a…
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare…
With Evrysdi, ‘Everyday Is Good,’ Says 61-year-old With SMA Type 3
[Editor’s Note: This is part of a series of articles into the discovery and development of Evrysdi, SMA’s…
Variety of Events Mark SMA Awareness Month in August
From candlelighting events to storytelling, efforts to mark Spinal Muscular Atrophy Awareness Month, observed each August, are underway to…
Study of Physical Activity by Patients in UK Under COVID-19 Opens
The University of Birmingham has begun a study to gauge the impact of the COVID-19 pandemic on adults…
Iowa Adds SMA as Pilot Program for Newborn Screening
The Iowa Department of Public Health has begun a pilot effort to screen newborns for spinal muscular atrophy…
Illinois Expands Newborn Screening to Include SMA
The Illinois Department of Public Health (IDPH) now includes spinal muscular atrophy (SMA) as part of its newborn…
3 New Spinraza Treatment Sites Added for SMA Patients in England
Adults with spinal muscular atrophy (SMA) can now receive treatment with Spinraza (nusinersen) at three new sites in…
Rare Diseases Clinical Research Network Opens Online Survey on COVID-19
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the…