Von Hippel-Lindau Specialist Registry

NeuroEndocrine Cancer Australia's VHL Specialist Registry is a resource that acknowledges those medical practitioners who are experienced in the management of neuroendocrine cancers and who fulfill certain criteria that NeuroEndocrine Cancer Australia has applied.

Please note that this list is not exhaustive, and there may be other qualified specialists not included in the registry.

Find a VHL Specialist

Find experienced doctors and multidisciplinary teams across Australia who specialise in diagnosing and treating VHL.

Being affected by VHL can be an extremely challenging experience, both for patients, and those supporting them.

Many patients with neuroendocrine cancer also experience a loss of faith and trust in a medical system that they feel may have misdiagnosed and unwittingly mismanaged their disease – a result of neuroendocrine cancers being relatively unknown and misunderstood.

It is critically important for individuals with VHL to develop and maintain supportive working relationships with VHL specialists who have expert knowledge and understanding of their complex cancer. This relationship is central to improving the quality of VHL patient care and clinical outcomes.

NeuroEndocrine Cancer Australia VHL Specialist Registry is a resource that acknowledges those medical practitioners who are experienced in the management of neuroendocrine cancers and who fulfill certain criteria that NeuroEndocrine Cancer Australia has applied.

These criteria are:

  • A qualified medical practitioner (without any restrictions) and legitimate interest in neuroendocrine cancer.
  • Has a reasonable volume of practice of neuroendocrine cancer patients
  • Has been involved in recent and ongoing education/CME which includes exposure to neuroendocrine cancer related topics
  • Has direct involvement with a dedicated or state-wide neuroendocrine cancer multi-disciplinary team/tumour board
  • Has a relationship with a hospital(s) that has the ability to provide a comprehensive nuclear medical service including provision of PET scanning and peptide receptor radionuclide therapies
  • Has direct involvement in neuroendocrine cancer related research

Involvement in the NeuroEndocrine Cancer Australia VHL Specialist Registry is evolving and will continue to list those medical practitioners who have experience in the management of neuroendocrine cancers.

Please note that this list is ongoing, and there may be other qualified specialists not yet listed.

If there are Doctors who you believe fit the criteria of being a VHL Specialist please contact NeuroEndocrine Cancer Australia at info@neuroendocrine.org.au or have them fill out the online registration form and provide their CV.

VHL Cancer Specialists - NSW
VHL Cancer Specialists - VIC
VHL Cancer Specialists - QLD
VHL Cancer Specialists - WA

Special Note

Neuroendocrine cancer patients seeking expert advice in the management of VHL or second opinions.

You should be aware that not all the doctors listed have the same treatment approach.

You must make your own inquiries as to whether a particular doctor’s approach complements how they want to treat your condition.

No endorsement by NeuroEndocrine Cancer Australia is intended for any of the doctors on this list, nor should an endorsement be inferred or implied.

VHL Specialist Registration Form

To join our online directory of VHL specialists, please fill in the form below. One of our team will contact you shortly to confirm your listing.

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