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 increase awareness of Inclusion Body Myositis and other rare progressive muscle disorders.

The Government remains committed to improving outcomes for people living with rare diseases, including inclusion body myositis and other rare progressive muscle disorders, through the UK Rare Diseases Framework and successive England Rare Diseases Action Plans. Increasing awareness among healthcare professionals is one of the framework’s four priorities.

As set out in the 2026 England Rare Diseases Action Plan, NHS England continues to expand rare disease education through the National Genomics Education Programme, including GeNotes, a clinical resource that now covers more than 150 rare diseases and has been integrated into primary care decision-support tools used by general practitioners. NHS England is also developing resources to support healthcare professionals in having sensitive conversations with patients receiving a rare disease diagnosis, while the Genomics Training Academy provides education and training to the specialist genomics workforce.

These initiatives support earlier recognition, diagnosis, and appropriate management of rare conditions.