Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, with reference to priority four of the UK Rare Diseases Framework, what steps his Department is taking to reduce regional variations in access to specialist care for patients with (a) hereditary angioedema and (b) other rare diseases.

NHS England regularly assesses the geographic spread of patients accessing highly specialised services. If there are any regional variations, NHS England will work with the relevant service to investigate and address these issues. No specific assessment has been made of patient-supported education as a means of reducing regional variation in care for hereditary angioedema or other rare diseases.

No specific assessment has been made of the adequacy of the recognition by clinicians in emergency settings of hereditary angioedema and other potentially life-threatening rare diseases. However, the 2021 UK Rare Diseases Framework aims to improve the awareness of all rare diseases, including hereditary angioedema. England’s second Rare Diseases Action Plan, published in February 2023, reports on progress made to increase knowledge and improve the resources available to healthcare professionals. This includes the development of GeNotes, an educational resource that aims to increase the awareness of genetic and rare diseases amongst healthcare professionals. The Genomics Education Programme actively delivers education and training to the National Health Service workforce to support awareness, knowledge and management of rare disease.