Latest News

Videos

Rare disease spotlight

Twitter

Hay muchas personas #invisibles alrededor de la #atrofiamuscularespinal #AME #SMA
Pacientes y familias conocen bien a quienes les apoyan (sanitarios, apoyos, investigadores,…)
La concienciación social es fundamental‼️
Gr. @FundameNet @biogen
Cc @SMAEurope

Great article highlighting benefits of universal #NewbornScreening

“I urge other states & territories to screen newborns for both these genetic disorders as we are in NSW to give babies with SMA or SCID the best chance of survival”
Health Min Brad Hazzard
https://www.smh.com.au/national/nsw/life-saving-tests-for-newborns-after-sydney-study-makes-fatal-condition-treatable-20220624-p5awbr.html

Load More...