SMA WORKSHOP

Roche Turkey organized a workshop moderated by Ipsos Research Company, bringing together various associations working in the field of SMA (Spinal Muscular Atrophy).

The workshop, organized to clarify the patient journey in SMA, the difficulties experienced by patients and their families during this process, and the priorities of the associations, was attended by Ece Soyer Demir and Mehmet Demir, representing our association.

To understand the SMA journey, a general assessment of the journey was made by discussing the initial symptoms, diagnosis, management of the disease by medical units, therapies received, moments of disease worsening and experiences during hospitalization, procedures and problems encountered in obtaining medication, and reimbursement problems.