We are delighted to inform you that the European Alliance for Newborn Screening for SMA has been granted the EURORDIS Company Award for Patient Engagement which recognises the collaborative effort of the companies involved in ensuring that newborn screening (NBS) programmes in all European countries diagnose all newborn children with SMA.
Our Alliance is a collaborative group made-up of patient organisations, academic institutions, health insurance providers, pharmaceutical and medical technology companies, as well as others, which formed a multi-stakeholder campaign, the European Alliance for Newborn Screening for 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.
This close collaboration reinforces the demand of the rare disease community for a harmonised approach to newborn screening in Europe. The achievements of the Alliance, which is succeeding in creating much-needed awareness and momentum towards an accelerated implementation of newborn screening for SMA in an ever-growing number of European countries, merits acknowledgement. The Award also recognises how the Alliance has set a model example which has the potential to encourage similar initiatives across other rare diseases.
On behalf of all members of the SMA Newborn Screening Alliance, we would like to take this opportunity to thank Eurordis for this recognition.