News

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

Alexander Disease Group Discussion

September 2022

Voice of the Raregivers™ – Alexander Community Angel Aid are holding a six-week facilitated group discussion starting on 19th October to produce graphics to help bring a voice to parents’ experiences of raising a child with a rare disease. Please see information provided by them below:

Read more

Community Member’s story in the Daily Record

September 2022

Raising Awareness this Leukodystrophy Awareness Month 💙 A community member’s story has been featured in the Daily Record. Michael has ALD and is trying to raise awareness of the condition this leukodystrophy awareness month. He hopes to make others aware of leukodystrophy and our community.

Read more

September is Newborn Screening Awareness Month 👣

September 2022

We are campaigning for Adrenoleukodystrophy (ALD) to be added to the newborn screening programme 💙 Although our application to the Newborn Screening Consultation was previously unsuccessful, we continue to implement projects to gather evidence to support our next application. This includes a study in collaboration with Sheffield Hallam University to find out ‘The psychosocial impact on parents of having a child diagnosed with Childhood Cerebral Adrenoleukodystrophy (CCALD)’. More recently we are working in collaboration with Genetic Alliance to carry out a Scoping Study to capture attitudes and opinions about whether X-ALD should be included as part of the newborn screening programme.

Read more

Yaya Foundation Webinar

September 2022

‘POLR3-related (or 4H) Leukodystrophy – Not So Rare?’ The Yaya Foundation are hosting an online webinar called ‘POLR3-related (or 4H) Leukodystrophy – Not So Rare?’ on Thursday 6th October 15:00-16:00.

Read more