Brussels, 8 February 2022 – The European Alliance for Newborn Screening for Spinal Muscular Atrophy (Alliance) won the 2022 Black Pearl Award in the category: “EURORDIS Company Award for Patient Engagement”.
The European Alliance for Newborn Screening for SMA organised a webinar for SMA Europe members on the topic of newborn screening techniques for SMA, which was covered from a variety of viewpoints.
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.
In order to advocate for better access to treatment and care, we need to gain an in depth understanding of the experience people living with SMA have, with regards nutrition, physiotherapy and treatment. The opinion of people living with SMA is essential to achieve this goal.