Good News for NBS on Rare Disease Day - Image 1

Good News for NBS on Rare Disease Day

Posted on: 28/02/2022

Today is Rare Disease Day and we are thinking of all the families living with rare disease every single day, especially our MLD warriors. 

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. 

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