The goals, as defined by the Registry Law, are to describe the incidence and prevalence of ALS in a more accurate manner, examine risk factors such as the environmental or occupational ones, and characterize people living with ALS demographically. This Registry is also important for its innovative use of administrative data (Clinical History, Registries of Disabilities) and the implemented self-report strategy to identify cases.
We participated in a Communication Session for Patients Associations at the Asociacion Medica Argentina. What are Clinical Studies? How are they carried out? Protection of patients. Ethical and legal framework. The invitation was made by Redapta, the patient associations’ network for advanced therapies, of which we are members. The program was developed as follows:
Our gratitude to Alicia and Julio, parents of Leandro. Alicia wrote a book dedicated to his memory where she narrates a story of fight against ALS and love for life. The book was presented among the people she knows in Bahía Blanca and she gave our Association a contribution of AR$ 10,000 for the “After ALS” Project.
During the first days of the month, we have delivered 6 AAC devices to people living with ALS.