News

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

Travel Insurance & Inherited Metabolic Disorders

May 2022

Metabolic Support UK Survey Metabolic Support UK have done some incredible work into the important issue of families struggling to obtain travel insurance to provide coverage for their inherited metabolic disorder. The survey results are available to view and actions MSUK have taken to help.

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Newborn Genomes Programme

May 2022

Genomics England Survey Which conditions should be screened for for as part of the Newborn Genomes Programme? Have your say by completing Genomics England survey by Tuesday 14th June💬 The survey is to test the wording of some of the draft principles that will guide Genomics England in choosing the conditions to screen for in the newborn babies’ genomes. To find out more❓: Genomics England Website To access the survey 📝 : Newborn Genomes Programme Survey

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Book of Poems

May 2022

Leukodystrophy and Motherhood One of our beneficiaries has written a wonderful and powerful book of poems about leukodystrophy and motherhood. She wants to share it with other families affected by rare disease to help others by letting them know they aren’t alone.

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SwanBio Therapeutics Press Release: Adrenomyeloneuropathy

May 2022

Gene Therapy for AMN Clinical Trial Update SwanBio Therapeutics have announced additional preclinical data that supports Clinical Advancement of First AAV-Based Gene Therapy for Adrenomyeloneuropathy. SBT101 preclinical studies demonstrate improvement in behavioral and biochemical markers of disease. Further support for dosing strategy for Phase 1/2 study initiating later in 2022.

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