I loved the VHL Alliance's virtual family weekend presentations Oct. 24 and I hope they do more in the future!
However, I would’ve also liked to see:
- something on what the “Curing cancer through VHL” tag line actually means. It seems like it’s a strategy to raise funds and awareness with the general public. For example, if you cure VHL then do you cure (the hundreds types of) cancer?
- Research or study literature on psychosocial aspects of living with VHL or chronic illness (e.g. psychosocial oncology) in general. They’ve had clinical psychologists (PhD./professors of college) in the last few years.
I’m grateful that the VHL Alliance has shared the recordings of previous presentations online. Unfortunately, I was cut-off from participating in the “roller coaster” break-out session this year, so I was disappointed. But the other presentations -I liked.