European Alliance for
Newborn Screening in Spinal Muscular Atrophy
Opening a new horizon
for children born with spinal muscular atrophy
SMA: Screen at birth, save lives
Identifying children living with SMA through NBS allows for treatment to be started on time, preventing motor neuron death and a life with severe disability or even death.
Prof. Laurent Servais talks about the financial cost and quality of life of patients with SMA. He shows one family that had two children born with SMA, one was detected at birth through newborn screening and treated early, and the other child was diagnosed with SMA after symptoms already started. The positive outcomes of SMA […]
Today, June 28 2002 is International Neonatal Screening Day (INSD) “International Neonatal Screening Day (INSD) is an international initiative launched by the International Society for Neonatal Screening (ISNS), the International Patient Organisation for Primary Immunodeficiencies (IPOPI) and the European Society for Immunodeficiencies (ESID), working in partnership under the multi-stakeholder Screen4Rare platform to promote the importance of […]
The AFM-Téléthon, the University Hospitals of Strasbourg, and the Center Hospitalier Universitaire de Bordeaux are launching a pilot project called DEPISMA for neonatal genetic screening for spinal muscular atrophy (SMA) in the Grand-Est and in Nouvelle-Aquitaine regions of France, in collaboration with the regional health agencies. The first babies to be screened for SMA will be […]
The European Alliance for Newborn Screening in Spinal Muscular Atrophy demands that by 2025, newborn screening programmes in all European countries include a test for spinal muscular atrophy for all newborn children.