Original
In my case, there was no family history of VHL. Two gastroenterologists were responsible for getting me genetically tested, because my initial symptoms were gastrointestinal. If there is a family history of VHL, obviously genetic testing would be the first course of action. A neurosurgeon, urologist, retinal oncologist, ENT and general practitioner are absolute necessities. If pancreatic changes are noted, a surgical oncologist is necessary. I don't believe an oncologist is necessary as long as all care is being coordinated by a member of the health care team.