On this day we raised awareness of our efforts to get ALD added to the UK newborn screening programme on our social media channels. See our posts below:

It is International Neonatal Screening Day 👣 We will post information about work being done to improve screening for rare diseases and our efforts to get ALD added to the UK newborn screening programme. Please raise awareness by sharing our posts 💙 #INSD2022 #newbornscreening

 

Today is International Neonatal Screening Day and we are proud to be a member of the UK NBS Collaborative, working towards meaningful change and extension to the UK newborn bloodspot programme #newbornscreening #INSD2022

 

Thank you to those who participated in our CCALD psychosocial impact study💙 Interviews have been conducted and researchers are currently analysing the data collected. Findings will help to provide evidence towards #newbornscreening for ALD #INSD2022

 

A Rare Disease Framework priority is ‘Help patients get a final diagnosis faster’. The government are committing to more screening programmes which aim to provide further tests or treatment at earlier stage to improve outcomes: https://www.gov.uk/government/publications/uk-rare-diseases-framework/the-uk-rare-diseases-framework#priorities #INSD2022 #newbornscreening

 

Are you a man aged 16 and over affected by ALD/AMN or their family member/carer? Complete our Newborn ALD Screening Study and help our efforts to get ALD added to the UK newborn screening programme 👣💙 Survey: https://www.screenourboys.org/post/newborn-screening-study #newbornscreening #INSD2022

 

We are part of the Newborn Screening Collaborative, 13 likeminded rare disease charities. The collaborative has one common goal to increase the number of conditions screened for at birth #newbornscreening #INSD2022