News

Here are the latest news stories from Alex TLC and about topics we think you'll find useful.

Our Children’s Book for ALD

November 2023

Read quotes from families who have used the book 💙 Our children’s book is to support siblings of children affected by childhood cerebral Adrenoleukodystrophy (CCALD).

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Leukodystrophy and Employment Information

November 2023

View our webpage with useful information, presentations and links We held a managing leukodystrophy in employment workshop last month. It was an informational workshop about what reasonable adjustments employers should be offering to individuals affected by health conditions, including leukodystrophy.

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The Generation Study – article raising concerns

November 2023

Genome profiling at birth – is this the future we want for our children? An interesting article raising concerns about the Generation Study, co-authored by Dr Robin Lachmann. The article discusses how newborn screening can be improved, whether whole genome sequencing (WGS) is the best test to use and changing the study design.

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Gene Therapy for CCALD not available in Europe

November 2023

Gene therapy for CCALD is not available to treat children in Europe due to dispute Skysona is BlueBird Bio’s gene therapy treatment for childhood cerebral Adrenoleukodystrophy (CCALD). This article discusses the decision Bluebird Bio made to leave the EU after a dispute with Germany, meaning Skysona is not available to treat children in Europe – as a result, children with CCALD have been left with no treatment

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