European SMA Newborn Screening Alliance

Spinal muscular atrophy is often diagnosed too late for children to benefit fully from timely treatment, because newborn screening is not yet standard everywhere in Europe.

Partners4Patients Foundation's role

Secretariat for more than three years: coordination, governance, and operational support

Outcome

Sustained multi-country collaboration advancing the inclusion of SMA in national newborn screening programmes.

About the project

Serving as Secretariat for more than three years for the SMA Newborn Screening Alliance, a European multi-stakeholder initiative founded by SMA Europe, connecting patient organisations, healthcare professionals, researchers, industry partners, and policy experts to accelerate earlier diagnosis and timely treatment access for children born with this rare neuromuscular disease.