The Association of Friends of Spinal Muscular Atrophy (AAME, in the acronym in Portuguese) recently held the 4th Annual Conference on Spinal Muscular Atrophy (SMA). The event brought together clinicians, family members and specialists who exchanged experiences on the disease. Legal issues, medical care and the experiences of patients were discussed. In addition, doctors and laboratory representatives talked about ongoing research on new medications for SMA, including those already in their final stages.
The most commented topic, however, was undoubtedly the recent certification by the Brazilian Health Regulatory Agency (ANVISA, in the acronym on Portuguese) of Spinraza, the first medication approved in the world for the treatment of the degenerative disorder. Experiences of professionals and families of users, expert opinions and the expectations of those waiting for the release of the drug for sale in Brazil were issues debated on the occasion.
Watch the video produce by Portal Health Connections.