News - RESEARCH

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

AGS Insight Session

January 2024

NIHR Patient Engagement Opportunity to shape a research study A potential engagement opportunity for families or people living with AGS, to feed into the development of a potential clinical trial that may be coming to the UK.

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CTX Webinar

December 2023

CTX Alliance held a webinar with Mirum Pharmaceuticals Earlier this month, CTX alliance held a webinar to provide an opportunity for the CTX community to learn about Mirum Pharmaceuticals recent RESTORE study results evaluating Chenodal (chenodeoxycholic acid) and the importance for CTX patients.

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Young People’s Survey

December 2023

Disabled Children’s Partnership first children and young people’s survey We wanted to share details of the Disabled Children’s Partnership’s first children and young people’s survey.

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