The UK Newborn Screening programme desperately needs urgent revision to keep up with other Western countries, many of whom screen for considerably more diseases and have a far more streamlined up to date system, which in turn gives a far more positive outlook for children affected by these associated conditions.
With this in mind, the Newborn Screening Collaborative, a collection of 13 rare disease organisations including Genetic Alliance UK, have highlighted three main priorities for 2023 which if given the correct focus will ensure we begin to get on the right track…
Toni Mathieson, Chief Executive Officer of Niemann-Pick UK (NPUK) writes:
“…as part of the Newborn Screening Collaborative we must first and foremost review the UK NBS policy and processes, including those being developed in response to the existing rare disease framework and genomics plan. This is essential as to properly grow and develop we must first identify areas that are not working, highlight where the gaps are, and then use our shared strength and expertise to make recommendations for improving in a realistic and feasible way…”
We will be sharing each of our main three priorities for 2023 over the course of the next few weeks, however as a Collaborative our impact and influence throughout this year and beyond will only be effective if we receive support, interaction, and engagement from YOU. So please make sure to like, share, and comment on our posts to show you are a supporter of NBS and an advocate of those who need a stronger voice.