Here are the latest news stories from Alex TLC and about topics we think you'll find useful.
Available to order We have created a Children’s Book to support the siblings of children diagnosed with childhood cerebral adrenoleukodystrophy (CCALD). The primary goal is to support children and their families to build emotional resilience, and openness to talk and ask questions about a diagnosis of CCALD.
Our Support Services Manager, Karen, talks to Anglia News We are very proud of our Support Services Manager, Karen, who was featured on ITV Anglia News on Friday. She shared her story about how ALD has affected her family and discussed the vital need for newborn screening for ALD.
Do you live in the Greater Manchester area? If you answered yes to both of these questions, please get in touch with suzanne@alextlc.org
Summary Report Available to View Our study involved both a survey and individual interviews to capture attitudes and opinions about whether ALD should be included as part of the newborn screening programme.
ALD Connect 2022 Annual Meeting and Patient Learning Academy ALD Connect are holding their 2022 Annual Meeting and Patient Learning Academy on Friday 11th, and Saturday 12th November!
Resource for patients and families residing outside of the US Bluebird Bio have created a short resource that aims to answer questions about bluebird’s gene therapies for patients and families residing outside of the US.
