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23. Mar 2021

Launch of the Newborn Screening Whitepaper

It’s time for Europe to bridge the gap in newborn screening for spinal muscular atrophy. The European Alliance for Newborn Screening in Spinal Muscular Atrophy calls upon the government of Europe to include a test for SMA in national newborn screening programmes.

SMA: Screen at birth, save lives

admedicum, in its role as the Secretariat for the European Alliance for Newborn Screening in SMA, was very proud to help to write and support the launch of the Whitepaper: Spinal muscular atrophy: screen at birth, save lives. Download the Whitepaper

The Alliance members agree that policy decisions on newborn screening should be taken with the ultimate goal to benefit those who live with rare diseases, like spinal muscular atrophy, as well as their closest families. Newborn screening for SMA gives young patients and their families the confidence that they will be taken care of, treated, and never left alone in managing their disease.

admedicum will continue to support its client SMA Europe, and the Alliance in 2021 to ensure that the Whitepaper publication is just the beginning of advocating for newborn screening programmes in Europe to screen for SMA for all newborns, no later than 2025. Thank you to SMA Europe and all the Alliance members for trusting and including admedicum as the Secretariat, we are honoured to be in a position to support a patient group in creating change in society to benefit people living with a rare disease. 

The project team from admedicum supporting the Alliance includes: Dr. Andreas Reimann, Meike Neukirchen, and Rob Pleticha.