On behalf of the Ministry of Health, the chairman of the Institute of Child's Health (where the National Newborn Screening is conducted), announced during the Annual Meeting of MDA Hellas for SMA the approval of a National pilot Newborn Screening Program for SMA as well as a pilot screening program for SMA carriers that will be carried out in 2 greek islands, Crete and Ikaria. Currently, preparations are ongoing an the official start is awaited within a few months. 

For further information can be found in the press release of the Greek Ministry of Health (in Greek). Please click here. 

The SMA Newborn Screening Alliance has just launched a new version of the White Paper on newborn screening for spinal muscular atrophy. The White Paper was presented at the latest SMAcademy webinar and you can now consult it here.

Neonatal screening is currently available in the following thirteen Italian regions:

Abbruzzo, Campania, Emilia-Romagna, Friuli - Venezia Giulia, Lazio, Lombardy, Liguria, Puglia, Piedmont e Valle d'Aosta, Tuscany, Trentino - South Tyrol, Veneto, Sicily.

Now three further regions are in the process of adding SMA to pathologies under screening: Basilicata, Marche and Sardinia.

For further information please see the following article.

Share4Rare has reviewed this article highlighting the work of six patient organisations including SMA Europe. 

The important role of newborn screening is emphasized when it comes to enhancing the quality of life of people living with rare diseases and their families. Patient organisations like SMA Europe are vital to make these tests available in more and more countries in collaboration with health care professionals, governments and the society. 

For more information, please click here:

https://www.share4rare.org/news/role-patient-organisations-newborn-screening-rare-diseases