The ‘Neuromuscular Disease Treatment Center,’ also known as the ‘SMA Clinic,’ is opening a new chapter in the treatment of the rare SMA disease. Today, Wednesday, February 5, 2025, the second session of this special clinic was held at the National Institute of Neurosciences and Hospital in Agargaon.
This special clinic was launched in October 2024 for the welfare of patients suffering from rare diseases.
The SMA Clinic is a specialized arrangement where relevant healthcare professionals provide treatment to patients from various parts of the country under one roof. The treatment of SMA requires a multidisciplinary approach. Therefore, bringing together almost all necessary disciplines, the ‘Neuromuscular Disease Treatment Center,’ a special SMA clinic, is organized at the National Institute of Neurosciences and Hospital in Agargaon.
At the clinic, a total of 20 patients with genetic diseases, including SMA, from different regions of the country received free services. In addition to medical consultations, the clinic also provides therapy, sample collection and testing, and advice on necessary devices.
SMA or Spinal Muscular Atrophy is an incurable rare disease. It is a genetic disorder caused by the degeneration of motor neurons that control muscle movement. SMA is classified from Type One to Type Four based on the severity of the disease. Although medication is available, it is beyond the financial reach of the general public. Like many countries around the world, our country also has patients suffering from this disease. However, due to a lack of awareness, a significant portion of those affected are not being tested and treated. Consequently, numerous children in the country are losing their lives to this disease due to a lack of treatment.
Later, a discussion meeting was organized. Present at the meeting were Dr. Shah Md. Helal Uddin, Additional Secretary of the Ministry of Health; Professor Dr. Kazi Din Mohammad, Director, National Institute of Neurosciences and Hospital; Professor Dr. Md. Badrul Alam, Joint Director, National Institute of Neurosciences and Hospital; Professor Dr. Narayan Saha, Head of the Pediatric Neurology Department, National Institute of Neurosciences and Hospital; Professor Dr. Zubaida Parvin, Assistant Professor, Pediatric Neurology Department, National Institute of Neurosciences and Hospital; François du Toit, Area Head, Central and Eastern Europe, Turkey, and Indian Subcontinent (CEETRIS), Roche Pharma International; Maria Dordevic, Area Finance Head, Central and Eastern Europe, Turkey, and Indian Subcontinent (CEETRIS), Roche Pharma International; Mark Hieb, Country Manager, Roche Bangladesh Limited; Wahiduz Zaman, Head of Integrated Strategy, NSRD and Hematology, Roche Bangladesh Limited; Hasan Mahmud, President, Cure SMA Bangladesh; Md. Omar Faruk, General Secretary, Cure SMA Bangladesh, among others.