VHL disease is different in every person, so there are no universal treatment recommendations. Appropriate treatment options can only be determined by careful evaluation of each patient’s unique situation–symptoms, test results, imaging studies, and general physical condition.
For healthcare providers who do not have very much experience with VHL and are looking to make a referral, please consider the specialists that are members of VHL Clinical Care Centers. The VHL Alliance or the Point of Contact (contact information listed here) can help you connect with any specialist that is a member of the VHL team at that particular institution. Remember: Early diagnosis and regular screenings are critical to delivering the best treatment.
The specialists that comprise the VHL CCC teams can also be great resources for healthcare providers who have some experience with VHL and are looking for a second opinion for your patient. For the most challenging cases, the VHL Alliance can connect healthcare providers to some of the leading experts in the field of VHL diagnosis and treatment. These clinicians serve on the VHL Alliance’s Clinical Advisory Council and/or are part of the VHLA’s Clinical Care Center program. For more information, contact the VHL Alliance.
For experts in VHL who are interested in establishing a Clinical Care Center at the institution where they work, please review the application and contact the VHL Alliance if you have questions about becoming a Clinical Care Center.