We are also delighted to share the England Rare Disease Action Plan which was published by the Department of Health & Social Care today. It contains an important committment to improving newborn screening, in line with the key policy changes our NBS Collaborative has been calling for (see NBS page) over the past few years:
Action 1: improving how decisions are made on newborn screening for rare diseases
In the year ahead this will be actioned through:
• a new UK NSC with a broader remit, revised terms of reference, and greater collaboration with researchers and stakeholders, including those with an interest in rare disease
• establishing a UK NSC Bloodspot Task Group to identify practical and innovative approaches to facilitate research and evidence which will inform evaluations of blood spot screening
You can read the full England Rare Disease Action Plan here:
The NBS Collborative will continue to work with the DHSC on this promise at every opportunity and hope that there will be more good news to share in the coming months.