Turkey under pressure over funds to treat rare disease ...Saudi Arabia

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Turkey under pressure over funds to treat rare disease
Tue, 2021-01-05 02:15 ANKARA: A new faultline of polarization emerged between the Turkish government and rights defenders over the treatment for some 1,100 children who suffer from a rare disease. Several desperate families have been conducting online campaigns to secure funds for the costly treatment of their children with spinal muscular atrophy (SMA) — a neuromuscular disorder that causes the gradual wasting of muscles and newborn mortality. The disease is treated either with a drug, called Sprinraza, that is administered every four months, or with a gene therapy, called Zolgensma, which is a one-off cure for babies under the age of 2 or below 21kg. Didem Demir, 2, has been struggling

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