About forty volunteers, eighteen families from all over the world and various guest speakers descended on Pelt today for the very first European family weekend around the WAGR syndrome. This rare disease affects about 500 patients worldwide who can suffer from kidney cancer, an eye defect, genital abnormalities and a general developmental delay. Organizer and mother of a WAGR patient, Linda Van de Sande, explains how this works: “There are many spontaneous children who can do a lot, but it is not always easy for the parents and the environment.”
Nienke Horemans 22-07-23, 18:08
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2023-07-22 16:08:40
#fellow #sufferers #family #weekend #rare #WAGR #syndrome #starts #Pelt
