A Neurological Alliance report is calling for improved treatment and care for the 150,000 U.K. residents living with rare neurological conditions such as spinal muscular atrophy (SMA). The report presents what the advocacy organization believes should be included in the U.K.’s coming new governmental framework for…
To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…
Cure SMA is offering free personal protective equipment (PPE) packages to support spinal muscular atrophy (SMA) patients in the U.S. during the ongoing COVID-19 pandemic. Through the temporary program, called COVID-19 PPE Package, SMA households can receive shipped supplies of antibacterial wipes, antibacterial hand sanitizer gel,…
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…
People living with spinal muscular atrophy (SMA) who need financial help to pay for treatment may now apply for aid through a new patient assistance program offered by the PAN Foundation. The foundation’s new program will provide up to $6,500 annually to each eligible patient. The money…
A new campaign is seeking to raise awareness of key motor development milestones for infants that, if missed, could mean spinal muscular atrophy (SMA) or other neuromuscular conditions. It’s been launched by Novartis Gene Therapies in collaboration with a diverse group of experts in the United Kingdom. Called…
Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…
To help children with spinal muscular atrophy (SMA) gain mobility and independence, Electric Bike Technologies (EBT) is donating 10 Liberty Trikes — and plans to double that gift next year. The Liberty Trike is a folding and active-mobility tricycle that can be used by children with SMA and…
As it does each September during Newborn Screening Awareness Month, Baby’s First Test is sharing information and stories that highlight efforts throughout the U.S. to bring attention to newborn testing. Baby’s First Test is a program of Expecting Health, an organization focused on pregnancy and newborn health. The…
SMA Europe has launched an alliance that is demanding that, by 2025, newborn screening programs in Europe include a test for spinal muscular atrophy (SMA). The new European Alliance for Newborn Screening in Spinal Muscular Atrophy (SMA NBS Alliance) was launched as a final initiative to mark this…
