Together for life - the chance to normality, an event supported by MaxBet

On the 17th of June, took place the first edition of the conference "Together for life - the chance to normality", organized by the SMACARE Association and supported by MaxBet.

The event aimed to encourage effective communication between people affected by Muscular Spinal Amyotrophy, specialists and public health authorities, who are expected to approve on the Romanian market the new medicine that can treat this condition. The main problem with the procedure is its high price.

Another aspect highlighted during the event was the collateral treatment which involves collaboration between teams of doctors and the development of long-term programs and individualized treatments for each patient.

Patient representatives and authorities present at the event identified the need to develop an integrated management of the disease, such as the re-establishment of the National Register for Spinal Amyotrophy or the need to settle breathing equipment for patients.

On 27th of June, another 2 hour debate took place and it was dedicated to the access of patients with Muscular Spinal Amyotrophy to the new treatment.