Together with other patient organisations, academic institutions, health insurance providers, pharmaceutical and medical technology companies, as well as others, we formed a multi-stakeholder campaign, the European Alliance for Newborn Screening in SMA, to ensure that by 2025, newborn screening programmes in all European countries include a test for SMA.
Identifying children living with SMA through NBS allows for treatment to be started on time, preventing motor neuron loss and a life with severe disability or even death.
Today, Politico Europe published an article we wrote in collaboration with members of the European Parliament; the President of the European Society for Immunodeficiencies; EURORDIS-Rare Diseases Europe and the Executive Director of IPOPI, highlighting the inequality that exists in Europe when it comes to access to newborn screening and stressing the importance of early detection and diagnosis of fatal or disabling diseases in infants. This is a right every family has, regardless of where they live in Europe.
Find out more by reading the article!