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“VHL or von Hippel-Lindau disease [or syndrome] is a rare genetic disorder associated with an increased risk of developing certain tumors. VHL disease is caused by a deletion or disease-causing variant (mutation) in the VHL gene. People who have VHL disease may experience tumors and/or cysts in up to ten parts of the body, including the brain, spine, eyes, kidneys, pancreas, adrenal glands, inner ears, reproductive tract, liver and lung. The mean age of onset is 26 years and 97% of people with a VHL gene variant have symptoms by the age of 65…” -US NORD

“In people with VHL, tumors may develop in up to ten different parts of the body. All of these tumors involve the abnormal growth of blood vessels. Most of these tumors are benign, meaning that they will not spread to nearby organs. However, VHL tumors in the kidneys, adrenals, and pancreas can grow to a stage where they become malignant… [Benign tumours can still cause serious problems, e.g. pressure, blockage] -VHLA, CCS

References

NORD, US (National Organization of Rare Disorders)

VHLA =VHL Alliance. Boston, MA, USA What You Need to Know About VHL: A reference handbook for people with von Hippel-Lindau, their families, and their medical teams.. Edition 6. Revised 2020. Sign-up at vhl.org.

CCS (Canadian Cancer Society). Family cancer syndromes, eg. VHL

Welireg/Belzutifan on VHLA's Patient Information Page ..."for the treatment of renal cell carcinoma (RCC), pancreatic neuroendocrine tumors (pNET) and hemangioblastomas (HB) in adult VHL patients." vhl.org

Health Canada also approved Belzutifan/Welireg (2022)

There are about 900 people with VHL in Canada (200,000 in all parts of the world)