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Rare Diseases

Question for Department of Health and Social Care

UIN 132918, tabled on 30 December 2020

To ask the Secretary of State for Health and Social Care, what progress has been made on the UK Strategy for Rare Diseases during the covid-19 outbreak.

Answered on

14 January 2021

The Government is committed to improving the lives of those affected by rare disease and continues to implement the commitments made in the United Kingdom Strategy for Rare Diseases which expired at the end of 2020. Recent developments include progress with Rare Diseases Collaborative Networks and work to strengthen partnerships for the National Congenital Anomaly and Rare Disease Registration Service. Details on NHS England progress can be viewed in their November 2020 Implementation Plan Progress Report.

The new UK Rare Diseases Framework was published on 9 January, which provides the high-level direction for rare diseases and replaces the previous strategy. The Department, alongside NHS England, continues to consider the impact of COVID-19 on patients with rare diseases.

Answered by

Department of Health and Social Care