Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how many people have been diagnosed with Rett syndrome in each of the last five years.

The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) records the number of people with congenital anomalies and rare diseases across England. In 2017, NCARDRS estimated that there are approximately 900 (1.6 per 100,000 population) people diagnosed with Rett syndrome living in England (95% confidence interval 843-960).

Data collection for rare diseases such as Rett Syndrome is at an early stage, therefore data are not available for each year. Further information on NCARDRS data collection can be viewed at the following link:

https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs

The Government is committed to improving the lives of those affected by a rare disease and continues to implement the commitments made in the United Kingdom Strategy for Rare Diseases to ensure that those living with a rare disease have the best quality of evidence based care and treatment. This can be viewed at the following link:

https://www.gov.uk/government/publications/rare-diseases-strategy