Where Are They Now: Zahra's Story In this special Rare Disease Month edition of “Where Are They Now”, we caught up with Zahra Alidina. In 2023, Zahra shared what life was like living with an autoinflammatory disease that is so rare it doesn’t even have a name. We’re so honoured to share this [...]
When a child is living with a rare rheumatic disease, answers often take time. Families may face long diagnostic journeys, unpredictable symptoms, and too few resources designed for their realities. Too often, their experiences remain unseen. RareTalks is a space created to change that. Held during Rare Disease Month, this annual virtual event brings together families, [...]
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