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A picket was held near the Moscow mayor’s office in support of adults with SMA. About it informs “Rain”.
Spinal muscular atrophy can be treated with the expensive medication Risdiplam. Picketers demand that medication be provided to adult patients. They are holding photographs of people who have died of SMA.
Formerly Vladimir Putin supported the idea to create a fund to help children with spinal muscular atrophy and other serious diseases requiring expensive treatment. The aid will be directed to children from those regions whose authorities cannot provide treatment at the expense of budgetary funds.
The Insider talked with Olga Germanenko, the director of the SMA Family Foundation, which has been operating for several years, about why the issue of SMA is now on the agenda of the federal authorities and what timely therapy can give.
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