SMA Newborn Screening Alliance wins EURORDIS 2022 Patient Engagement Award

 

The European Alliance for Newborn Screening in Spinal Muscular Atrophy (SMA NBS Alliance) was founded in 2020 by SMA Europe and a group of diverse stakeholders. admedicum has been there since the beginning acting as the Alliance Secretariat to support the work of SMA Europe with academia, other patient organizations, pharma companies and testing companies to reduce the time it takes for a child born with spinal muscular atrophy (SMA) to be diagnosed. admedicum believes that working together with all the stakeholders interested in a health condition that you can create meaningful and sustainable change.

 

Which is exactly what the SMA NBS Alliance is doing by creating European awareness on the need for SMA newborn screening and momentum towards an accelerated implementation of newborn screening for SMA which can be seen in an steadily increasing number of countries in Europe. (See the Map for a full view).

 

The EURORDIS Company Award for Patient Engagement recognises the collaborative effort of the companies involved in the European Alliance for Newborn Screening in SMA to ensure that newborn screening programmes in all European countries diagnose all newborn children with SMA.

 

 

Together with Alliance partners and supported by admedicum, the Alliance has achieved the publication of a Whitepaper on the need for SMA newborn screening. We have organized countless workshops, webinars and Steering Committee meetings with clinical professionals involved in SMA newborn screening and SMA Europe member organizations advocating for newborn screening tests in their country to include SMA.

 

We need a harmonized approach to newborn screening in Europe. We hope that the SMA NBS Alliance might be an example which has the potential to encourage similar initiatives across other rare diseases.

 

We would like to sincerely thank EURORDIS for this recognition and for SMA Europe for continuing to trust admedicum to work as the Secretariat of the SMA NBS Alliance.

 

 

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