We’re pleased to share Genetic Alliance UK’s research report, Independent Evaluation of the Generation Study: Views of support organisations.
The Generation Study aims to sequence the genomes of 100,000 babies to test for over 200 conditions – and to inform future policy around newborn screening. Alex TLC are proud to be part of the Patient and Public Involvement and Engagement Steering Group. The Generation Study is also being independently evaluated by a team of academics and Genetic Alliance’s own researchers.
Genetic Alliance’s report draws on this research and presents the experiences of rare condition support organisations. It explores how these organisations have engaged with the Generation Study to date, how prepared they feel to support families, and what is required to enable them to fulfil their role effectively.
