We are very pleased to announce that, in addition to the 23 national SMA patient organisations that form SMA Europe, our NBS Alliance has been joined by 12 organisations, including other patient groups, a university and pharmaceutical comapnies.
On 31st August 2020, SMA Europe launched a new European Alliance for Newborn Screening (NBS) in Spinal Muscular Atrophy (SMA).
The Alliance’s main objectives are to decrease the time it takes for a child born with spinal muscular atrophy to be diagnosed through NBS and to assist patient advocacy groups in their efforts to accelerate the identification of such children, given that early diagnosis and treatment of spinal muscular atrophy leads to better outcomes.
In order to advocate for newborn screening for SMA in Europe, SMA Europe founded the Alliance to bring together all stakeholders who share this vision and are willing to work together towards making it a reality.
These 12 organisations are:
- EURORDIS – Rare Diseases Europe, the European Alliance of Neuromuscular Disorders Associations,
- European Reference Network for Neuromuscular Disorders (ERN Euro-NMD)
- University Medical Centre Groningen
- University of Groningen
- HEALTH ECORE
- Perkin Elmer
Find out more about our SMA NBS Alliance. There is also a brochure available to download.