Duchenne muscular dystrophy advocates highlight treatment delays in Spain

As World Duchenne Awareness Day approaches on September 7, advocacy groups are highlighting the challenges faced by those living with Duchenne muscular dystrophy (DMD). In Fuengirola, Spain, local authorities will illuminate the City Hall and the Mare Nostrum roundabout in red to raise visibility for the rare genetic disease, which causes progressive muscle weakness and affects approximately one in 5,000 children.

Duchenne Parent Project España (DPPE) has issued a formal complaint regarding significant delays in patient access to essential therapies. According to DPPE President Silvia Ávila, patients in Spain face an average wait of more than 500 days to access innovative treatments, with waits for orphan drugs sometimes exceeding 700 days. The organization is calling for faster, more equitable access to multidisciplinary care, specialized physiotherapy, and the removal of geographic inequalities in treatment availability.