Mina Nazari

Abstract Arthrogryposis, Renal dysfunction and Cholestasis (ARC) syndrome is a rare inherited disorder caused by defects in the VPS33B trafficking protein, leading to impaired bile flow, progressive liver disease and early death. No effective treatments are currently available. Gene therapy offers a potential approach by restoring the missing VPS33B protein in liver cells.

Nurgal District, Afghanistan – In eastern Afghanistan’s remote mountain districts, months after a powerful earthquake tore through communities, thousands of families remain without permanent homes, sheltering under fragile tents. Now winter has set in, compounding the crisis. Plastic tarpaulins flap against the wind, firewood is scarce, and as temperatures continue to drop, each night becomes a test of endurance. “I was asleep when the earthquake happened,” recalls Safaraz.

Torkham, Afghanistan – At IOM’s reception centre near the Torkham border, families arrive in waves – coated in dust, tired, anxious, and unsure of what’s next. Among them is Nasrin*, a mother gently pushing her husband’s wheelchair, with her two daughters by her side. After spending most of her life in Pakistan, Nasrin is back in Afghanistan – not by choice, but because she was forced to. “I had to leave everything behind,” she says.