The Project - Hope For Aussies With Von Hippel Lindau Syndrome

The Project interviewed VHL patients this week, helping to bring attention to the need for Government support to add belzutifan to the PBS.
39-year-old mum Amelia, and her two sons Xavier and Leo, are living with a rare and debilitating condition, Von Hippel-Lindau Syndrome. The family is now fighting to get a new miracle treatment, which only one person in Australia can afford, to be put on the PBS to make it affordable for all.