News - ALD

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

Dutch ALD newborn screening

September 2023

Starts on 1st October in the Netherlands From 1st October Dutch ALD Newborn screening is going nationwide. This is a promising development in the Netherlands.

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Children’s Book for CCALD

August 2023

A free resource for our community Our Children’s Book is a tool to be utilised by families following a diagnosis of Childhood Cerebral Adrenoleukodystrophy (CCALD), which parents can use in family discussions. It is to support children, to build emotional resilience and openness to talk and ask questions following the diagnosis.

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Children’s Book for ALD

July 2023

To support siblings and families of children diagnosed with Childhood Cerebral Adrenoleukodystrophy (CCALD) Our Children’s Book is a tool to be utilised by families following a diagnosis of Childhood Cerebral Adrenoleukodystrophy (CCALD), which parents can use in family discussions. It is to support children, to build emotional resilience and openness to talk and ask questions following the diagnosis.

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International Neonatal Screening Day

June 2023

Find out about our campaign to get ALD added to the newborn screening programme in the UK Wednesday 28th June is International Neonatal Screening Day. This day highlights the vital need to screen for conditions at birth, including leukodystrophy. We continue to campaign to get ALD added to the newborn screening programme in the UK. To find out more, visit our campaign page: Screen Our Boys

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Children’s Leukodystrophy Book

June 2023

To support children affected and their siblings Our children’s book to support the siblings of children diagnosed with childhood cerebral adrenoleukodystrophy (CCALD) is available to order for free.

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