Hereditary Angioedema: Diagnosis

Department of Health and Social Care written question – answered on 24th May 2023.

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Photo of Christopher Pincher Christopher Pincher Conservative, Tamworth

To ask the Secretary of State for Health and Social Care, whether he has made an assessment of (a) the incidence and (b) rate of misdiagnosis of Hereditary Angioedema in England; and if he will make a statement on boosting awareness of the condition in the medical profession.

Photo of Helen Whately Helen Whately Minister of State (Department of Health and Social Care)

Information on the incidence and rate of misdiagnosis of hereditary angioedema (HAE) is not held by the National Health Service at a national level.

A survey of centres providing care for people with HAE in the last three years conducted by the HAE community found that there are approximately 1150 patients with identified HAE in England, with 90% of centres responding.

Raising awareness of rare diseases, including HAE, among healthcare professionals is one of the four priorities of the 2021 UK Rare Diseases Framework. Significant progress was made in 2022 against commitments in England’s first Rare Diseases Action Plan to increase awareness of rare diseases. This includes the development and expansion of innovative digital resources on genomics and rare diseases, specifically aimed at healthcare professionals.

A new action in England’s second action plan, published in February 2023, will see rare diseases incorporated in the educational strategies for the nursing and midwifery, pharmacy and primary care workforce. Progress made over the year ahead will be detailed in England’s 2024 Rare Diseases Action Plan.

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