Newborn Screening Article
By Sara Hunt, Our CEO Our CEO, Sara’s, article ‘Why Teddi’s MLD gene therapy story should provoke immediate change for newborn screening’ has been featured in National Health Executive Magazine.
Here are the latest news stories from Alex TLC and about topics we think you'll find useful.
By Sara Hunt, Our CEO Our CEO, Sara’s, article ‘Why Teddi’s MLD gene therapy story should provoke immediate change for newborn screening’ has been featured in National Health Executive Magazine.
Financial Grant Awarded for Community Weekend A huge thank you to Jeans for Genes for awarding us with a grant towards our Community Weekend in April 💙
How can you access sessions? The Counselling Service provides weekly counselling appointments via video call or telephone, free of charge for all our adult community members.
Online Leukodystrophy Conference ELA International Families and Research Meeting is being held on Saturday 15th and Sunday 16th April from 13:00-18:00 (GMT).
An important month for raising awareness of the condition and the vital research 💗📄 We want to say a huge thank you to Vigil Neuroscience for their vital ongoing research into this condition. To find out more about their research, including their clinical trial for ALSP, visit: https://alspstudy.com/
Articles, Blogs and podcasts 📄🔉 We’d love to hear from you…what leukodystrophy or rare disease articles, blogs and podcasts do you like to follow or would you recommend for our community?