WAGR story wins FINDACURE Student Voice Competition
Findacure's Student Voice Competition is an annual, international essay competition that focuses on raising the profile of rare diseases within the medical field, particularly with medical students, nurses, and scientists who may have never come across rare diseases in their training. Findacure is a UK-based charity that is building the rare disease community to drive research and develop treatments, and to transform the world's understanding of rare diseases and the devastating impacts they have on people's lives.
Sanjana Ashok, a medical student from St. George's University of London, showed interest in writing a WAGR syndrome-related essay. Linda van de Sande, IWSA Board Member and European Representative--and Dylan's mother--spent time with Sanjana sharing her experience of caring for a child with complex medical needs during a pandemic.
In her essay, Sanjana gets to the heart of the extra challenges posed by COVID for rare disease patients and, most especially, to the profound power of a physician asking the simple question, "How are things at home?".
"How did life change during a worldwide pandemic? The story of a little boy with WAGR syndrome" is a story that many rare disease families can relate to in one way or another.