Mary, Joyce and Mishy's story living with Von Hippel-Lindau (VHL) - Documentary Short Film (90 secs)

Mary, Joyce and Mishy inherited a condition called Von Hippel-Lindau (VHL) syndrome. Each of them have tumours and cysts in their vital organs, with some that cannot be removed through surgery due to the risk of causing irreversible damage.
As these tumours grow, they can put pressure on organs and nerves, causing severe pain, permanent brain damage, paralysis, blindness and life-threatening complications.
A TGA approved oral drug called “Belzutifan” is available and has proven to be effective in controlling and shrinking kidney cancer, brain and spinal tumours and pancreatic tumors.
The Belzutifan Petition garnered 17,803 signatures in 4 weeks.
The Pharmaceuticals Benefits Advisory Committee (PBAC) is set to consider the potential listing of Belzutifan at their upcoming meeting in July 2024.
Your input is invaluable in this decision-making process. For more information head to: neuroendocrine...
Produced by Jennifer Dudgeon, Illustory