Our rare disease quality statements project, led by Sue Farrington https://rarediseaseqs.org/, co-developed with rare disease stakeholders a set of quality statements for rare disease, which we hope will be used by relevant authorities across the four nations as the basis for a quality standard for rare disease.  We developed, through collaboration across the rare disease community, a set of statements which clearly set out what high-quality, sustainable care, treatment and management look like for rare diseases.

Our statements were reviewed by the NICE Quality Standards Advisory Committee for inclusion in the NICE library of quality standards in Nov 2025.  The original statements have been reduced to a shorter quality standard.

The draft quality standard is now available for consultation (from 6 January 2026 to 20 January 2026).

Have your voice heard!

Please add your perspective to maximise our advocacy towards local implementation of what matters most to you!

The final quality standard is expected to publish on 27 February 2026.