On Friday 26 March 2021 the Alliance officially launched the Whitepaper to the public with members from the SMA NBS Alliance, SMA Europe member organisations, policymakers, and other stakeholders.
The European Alliance for Newborn Screening in Spinal Muscular Atrophy (led by SMA Europe) demands that by no later than 2025, newborn screening programmes in all European countries include a test for spinal muscular atrophy for all newborn children.
To help achieve that goal and encourage different countries to approve SMA NBS, the Alliance is proud to announce the publication of the Whitepaper on the need for newborn screening for SMA.
The Whitepaper summarises the major reasoning for introducing SMA newborn screening. It is intended to inform a systematic dialogue in the healthcare systems in Europe to help foster the introduction of SMA Newborn Screening for all children in Europe.
- Welcome and introduction by SMA Europe
- Opening remarks by Mr. Cyrus Engerer, Member of European Parliament, Malta
- Video message from Ms. Claudia Gamon, Member of European Parliament, Austria
- Roundtable participants discussing the importance of newborn screening for SMA:
- Dr. Stelios Kympouropoulos, Member of European Parliament, Greece
- Mrs. Marie-Christine Ouillade, Chair of SMA NBS Alliance Steering Committee, SMA Europe, AFM Telethon
- Ms. Jana Popova, patient advocate with EAMDA, European Patients Forum
- Professor Eduardo Tizzano, Head of Pediatrics and Director Department of Clinical and Molecular Genetics, Hospital Universitari Vall d’Hebron
- Kacper Rucinski, SMA Europe
- Moderated by Dr. Andreas Reimann, Co-founder and managing partner, admedicum