About This Community
Von Hippel–Lindau (VHL) disease is a rare genetic condition that causes tumors and cysts to develop in the brain, eyes, kidneys, pancreas, and adrenal glands. In this community, members discuss symptoms, diagnosis, medications, treatments (and side effects), genetic testing, and the ongoing care needed to monitor and manage VHL. It’s a compassionate space to connect with others who understand the challenges of living with a rare disease and to find strength and reassurance through shared experience.
Inspire community guidelines
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