Global SMAdvocacy Event

The Global SMAdvocacy Event brought together 70 patient advocates from 50 countries to engage in urgent issues in SMA patient advocacy.

Advocates engaged in three workshops to assess the state of the art, establish end goals, and plan strategies to tackle seven challenges in SMA advocacy: equity in access to SMA medicines, reimbursement of SMA medicines, access and reimbursement of Standards of Care, national registries, access to diagnosis and newborn screening, supporting SMA-specific research, and influencing policy. In parallel, industry representatives worked together to set strategies for better patient involvement and engagement in all phases of drug development.  

All patient advocates contributed with their diverse experiences and first-hand expertise to grow together towards a better future for all people living with SMA.