Patient Register 
Cure SMA Bangladesh is a registered public charitable foundation with PAN Bangladesh representation. It is a distinct, apolitical, non-profit, non-sectarian entity. We have just started our journey with 7 SMA families in March 2023, and have continuously been expanding our network since then to represent SMA families and individuals across the country. We support SMA families through accurate counselling, rich resource pool, patient advocacy and various direct family support services. We are extensively working to empower SMA patients and enabling them to access existing services.
Cure SMA Bangladesh has played a significant role in introducing of Risdiplam, an oral drug for SMA treatment, in Bangladesh. We are relentlessly working with all the stake holders to make the drug available to all the SMA patients. We are committed to all our members, the Bangladeshi SMA community, and to the imminent future where we will be a part of achieving universal and easy access to SMA treatments.
Spinal Muscular Atrophy (SMA) is a rare genetic neuromuscular condition, affecting approximately about 1 in 10,000 people. Muscle wasting and gradual mobility loss are symptoms of spinal muscular atrophy. It is brought on by degeneration of the nerve cells (motor neurons) that link the brain, spinal cord, and muscles of the body. The muscles used for movements like crawling, walking, sitting up, moving the head, and even swallowing gradually weaken and shrink (atrophied) as the connection between the nerves and muscles is interrupted.
Although it is a rare disorder, 1 in 40 persons (called carriers) is estimated to carry the defective gene. There is a one in four probability that a kid born to two carriers will have SMA during every single pregnancy.
No changes are experienced in sensation or the emotional ability. Intellectual activity is normal, and most SMA patients have a tendency to be especially bright and social.
SMA has four different types since the severity of the condition differs widely from person to person. The terms SMA type I, SMA type II, SMA type III, and SMA type IV are used to indicate these. The age at which symptoms start, the degree of muscle weakness associated with them, and the highest level of motor function a child reaches are used to identify the specific type of SMA. Given that SMA has a variable impact on each individual, there is a wide range of severity even among these categories.
Spinal Muscular Atrophy (SMA) is a fatal disease. Most of the people have never heard of SMA, a rare genetic disease. But it is the truth that many children are born with the rare disease around the world Read more
Spinal Muscular Atrophy (SMA) is a fatal disease. Most of the people have never heard of SMA, a rare genetic disease. But it is the truth that many children are born with the rare disease around the world Read more
Spinal Muscular Atrophy (SMA) is a fatal disease. Most of the people have never heard of SMA, a rare genetic disease. But it is the truth that many children are born with the rare disease around the world Read more
154/6/4, Jhilkanan R/A, West Rampura, Dhaka-1219, Bangladesh
Tel: +88 0184 111 84 86
Fax: +88 0184 111 84 86