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 raise awareness of Duchenne muscular dystrophy.
The Government is committed to improving the lives of those living with rare diseases, such as Duchenne muscular dystrophy. The UK Rare Diseases Framework sets out four priorities, collaboratively developed with the rare disease community, which includes increasing awareness of rare diseases among healthcare professionals. We remain committed to delivering under the framework, and will publish an annual England action plan in 2025, which will report on progress.
The NHS England Genomics Education Programme (GEP) has continued to develop the GeNotes digital educational resource aimed at healthcare professionals, and has launched several specialities, including in neurology. Through the education and training of the workforce, the GEP will support earlier recognition, timely diagnosis, and healthcare professionals’ understanding of the genomic testing available for Duchenne muscular dystrophy.