News

The purpose of SMA Europe is to provide a framework to stimulate collaboration and accelerate translational research pathways in SMA and promote patient care.

  1. Join us for the launch of the SMA NBS Alliance Whitepaper and Expert Roundtable!

    Join us for the launch of the SMA NBS Alliance Whitepaper and Expert Roundtable!

    “There is no more time to waste for babies born with SMA – newborn screening programmes for SMA in all European countries no later than 2025”

    Join us for this virtual event on:

    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 newborn screening in SMA, the Alliance is proud to announce the publication of the Whitepaper titled Spinal muscular atrophy: test at birth, save lives.

    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 newborn screening for SMA for all children in Europe.

    Join us on Friday 26 March from 12:00–13:00 CET as we officially launch the Whitepaper to the public with members from the SMA NBS Alliance, SMA Europe member organisations, policymakers, and other stakeholders.

    Agenda

    1. Welcome and introduction by SMA Europe
    2. Opening remarks by Mr Cyrus Engerer, Member of European Parliament, Malta
    3. Roundtable participants will discuss 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
      • Mr Kacper Rucinski, Board Member, SMA Europe, Fundacja SMA Poland
      • Professor Eduardo Tizzano, Head of Pediatrics and Director Department of Clinical and Molecular Genetics, Hospital Universitari Vall d’Hebron

    Moderated by Dr Andreas Reimann, co-founder and managing partner, Admedicum

    Questions? Please email [email protected]