Haemochromatosis: Diagnosis

(asked on 11th September 2020) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve early diagnosis for those suffering from haemochromatosis.


Answered by
Edward Argar Portrait
Edward Argar
Minister of State (Ministry of Justice)
This question was answered on 25th September 2020

Steps to improve diagnosis of rare conditions, including genetic haemochromatosis, are being taken through the implementation of the UK Strategy for Rare Diseases, available at the following link:

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

In October 2019, the national conversation on rare diseases survey was launched to identify the major challenges faced by those living and working with rare diseases. We received almost 6,300 responses which, alongside the lessons learned from the experiences of rare disease patients during the COVID-19 pandemic, will be used to shape the post-2020 UK Rare Diseases Framework which will replace the Strategy.

The Genomic Medicine Service is supported by the National Genomic Test Directory which specifies the genomic tests that are commissioned by the National Health Service in England. Genetic haemochromatosis is included in the Test Directory.

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