The Hereditary Cancer Clinic at the Prince of Wales Hospital in Sydney, Australia, has recently commenced a VHL management clinic. The clinic will provide screening tests, multidisciplinary clinical review and referral for interventions where required.

The patients will have first been seen by staff at the Hereditary Cancer Clinic, Janet Tyler or Jessica Koehler (Associate Genetic Counsellors) and Dr Kathy Tucker (Clinical Geneticist) or Dr Lesley Andrews (Clinical Assistant). Consultations will have established a clinical or genetic diagnosis of VHL in the family.

Individuals with known VHL, or those at 1 in 2 risk, will be encouraged to attend the VHL management clinic at least annually or have a management plan co-ordinated through their local services. Following physical examination, referrals will be provided for routine screening and the results conveyed by phone to the patients. Patients are encouraged to access the VHL family Alliance both in Australia and via the Internet. If symptoms or signs indicate disease progression, referral will be made to the appropriate specialist and investigations arranged. While the primary referral team includes an opthalmologist, neurologist, renal surgeon and physician and endocrinologist, all with an interest in VHL, other specialists will be consulted as required.

The involvement of the genetic counsellors at the clinic will ensure that all patients and their families have access to ongoing psychological support throughout their surveillance and management of problems as they arise. We encourage involvement in the VHL worldwide and local family through the VHL Family Alliance. This multidisciplinary approach facilitates the optimal care for all aspects of the management of VHL.

Appointments are made through the Hereditary Cancer Clinic, Prince of Wales Hospital on

+61 (2) 9382 2551

As printed in the VHL Family Forum 14:1, April/May 2006. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.