SMA Events

SMA Events

SMA NBS Alliance Whitepaper Launch Event 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 at this virtual event on:

• 26 March 2021
• 12:00-13:00 CET
• Meeting link on Webex: https://de308142546.my.webex.com/de308142546.my/j.php?MTID=md6a8d7e9e3f65923a483ac5a32a8d39d (no registration required)
• Access code: 181 720 9509
• Password: nbs2021

If you have not used Webex, you can test your setup here: https://www.webex.com/test-meeting.html

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.

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. Expert 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
   • Moderated by Dr. Andreas Reimann, Co-founder and managing partner, admedicum

Questions? Please email [email protected]

SMA Europe’s 3rd international scientific and clinical congress on SMA

9th – 11th February 2022
Barcelona, Spain

Registration is not yet open. We will share the link in due course.

SMA Europe will hold its 3rd congress on SMA. More information will be available soon.