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UAE Donors Raise Dh10.6 Million for Child’s Rare Disease Treatment

By 19Network Editorial Team · Jun 6, 2026 · 2 min read

UAE Donors Raise Dh10.6 Million for Child’s Rare Disease Treatment

Donors secure Dh10.6 million to fund the world’s most expensive drug for a child suffering from Spinal Muscular Atrophy.

UAE donors and philanthropic organizations have successfully raised Dh10.6 million to fund a life-saving treatment for a two-year-old boy diagnosed with a rare genetic disorder. The collective effort secured the full amount required for a one-time gene therapy injection to treat Spinal Muscular Atrophy (SMA) Type 1. Treatment for Spinal Muscular Atrophy The Dh10.6 million sum covers the cost of Zolgensma, a gene therapy medication frequently cited as the most expensive drug in the world. SMA Type 1 is a severe neuromuscular condition that leads to progressive muscle wasting and can be fatal if not treated in the early stages of childhood. The treatment works by replacing the function of the missing or non-working SMN1 gene. The fundraising campaign was coordinated through licensed channels, ensuring all contributions met UAE regulatory standards for charitable giving. The Islamic Affairs and Charitable Activities Department (IACAD) in Dubai and various local foundations played a central role in facilitating the donations from private individuals and corporate entities. Regulatory Oversight and Community Support Health authorities in the UAE have previously approved the use of…