International Neonatal Screening Day takes place on 28th June each year
The day is an opportunity to raise awareness of the vital need for newborn screening worldwide. Since last year we’ve been involved in lots of newborn screening activities in the charity. This includes…
- putting together a working group for the newborn screening review for ALD later this year
- responding to the MLD consultation which recently opened
- being involved in The Generation Study which is testing for over 200 conditions, including ALD and MLD
- being part of Genetic Alliance’s Patient Empowerment Group newborn screening project
- being involved in the UK National Screening Committee (NSC) commissioned study studying ‘What are the available methods that evaluate “acceptability” of newborn screening programmes?’ and NSC Bloodspot Task Group modelling development challenges in newborn screening project
- presenting at the 13th International Society for Neonatal Screening (ISNS) European regional meeting
- raising awareness of our newborn screening campaign for ALD through press articles, including an interview with our CEO on World Brain Day
…plus lots more!
