Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to increase awareness of fibrodysplasia ossificans progressiva (FOP) among healthcare professionals (a) in general and (b) in relation to new-born screening.
The Government published the United Kingdom Rare Diseases Framework in January, to improve the lives of those living with rare diseases, such as Fibrodysplasia ossificans progressiva (FOP), including increasing awareness of rare diseases among healthcare professionals. This will be followed by action plans from each nation of the UK to implement the Framework. As part of the development of England’s action plan, the Department is working with Health Education England and NHS England and NHS Improvement to raise awareness of rare diseases, through the development of integrated point of care resources for clinical staff and targeted education modules for trainee healthcare professionals, aligned to the NHS National Genomics Test Directory.