DUCHENNE MUSCULAR DYSTROPHY

Motion Text

That this House welcomes the Boys to Men campaign launched by Action Duchenne to raise awareness of the changing needs of boys and men with Duchenne Muscular Dystrophy who with access to best medical care are living beyond their teens; urges the Government to ensure their care meets internationally agreed Standards of Care for Duchenne, delivered through specialist centres of excellence; calls for access to specialist education assessments and interventions, careers advice and support for independent living; further calls on the Government to explore a simplified means of clinical trials for genetic medicines that could speed up development of new treatments; and further calls for the prioritisation of research into a cure or treatment for this debilitating condition.