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HELP A CHILD WITH SMA: HOW PEOPLE WITH A RARE GENETIC DISEASE LIVE IN UKRAINE?
Now spinal muscular atrophy is not treatable in Ukraine, and parents of children with such diagnosis are forced to seek rescue abroad. Why is it like this?
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A CHILD DIAGNOSED WITH SMA, WHAT TO DO? INSTRUCTIONS FOR PARENTS
For the treatment of SMA, it is vital to timely recognize the disease and take immediate action. Since affected children have motor neurons dying every day, it is necessary to start treatment as soon as possible to ensure a child chance for an ordinary life.
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WHAT IS SMA?
Spinal muscular atrophy (SMA) is a rare genetic disease. SMA patients are missing the SMN1 gene, which encodes SMN, a protein necessary for motor neuron functioning.
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