VHL Clinical Care Centers in US hospitals: VHL Alliance (VHLA) has a comprehensive set of criteria for a hospital to receive the status of “VHL Clinical Care Center” (CCC). There is at least 1 CCC (or Comprehensive CCC) in each state (over 20 states total).
In Canada: Patients access all of their VHL specialist services through a national/provincial universal healthcare system. The VHLA in the US does not have the same impressive relationships with Canadian hospitals, but they list some resource clinicians.
Where do you go for VHL care? Questions and answers are shared with our (VHL Canada) peer community http://www.vhlcan.ca/contact--feedback.html.or https://www.facebook.com/vhlcan
VHLA also lists VHL treatment centres in over 13 other countries
Many of these countries also have their own patient support groups
*For details: https://www.vhl.org/patients/clinical-care/ccc/