Welcome to the VHL UK/Ireland website. Patient Support and Advice, Funding Research and Public Education for von Hippel-Lindau Syndrome (VHL) and similar genetic conditions.

Visit the VHL UK/Ireland Charity Homepage. Charity Objectives: To relieve the charitable needs of persons who have von Hippel-Lindau Syndrome (VHL) and similar genetic conditions such as Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) and Birt-Hogg- Dubé Syndrome (BHD) and their families and carers in the UK and Ireland for the public ...

VHL UK/Ireland Charity Objectives: To relieve the charitable needs of persons who have von Hippel-Lindau Syndrome (VHL) and similar genetic conditions such as Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) and Birt-Hogg- Dubé Syndrome (BHD) and their families and carers in the UK and Ireland for the public benefit in particular but ...

VHL (von Hippel-Lindau) disease. von Hippel-Lindau (VHL) disease patients battle a series of malignant and benign tumours their whole lives. The VHL gene is involved in many other forms of cancer. Manifestations commonly occur on the retina, brain and spinal cord, kidneys, pancreas, inner ear and adrenals (pheochromocytoma).

VHL is a rare disorder caused by a faulty gene. It is named after the two doctors who first described the disease, and affects about one in 35,000 people. Tumours develop in one or more parts of the body. Many of these tumours involve the abnormal growth of blood vessels in parts of the body which are particularly rich in blood vessels.

Carer centres and services - Official information from NHS about VHL UK/Ireland including contact, directions and service details

2022年2月19日 · Von Hippel-Lindau (VHL) disease is an inherited tumour predisposition syndrome and a paradigm for the importance of early diagnosis and surveillance. However, there is limited...

2024年9月5日 · NICE has recommended belzutifan for some adults with Von Hippel-Lindau disease, in final draft guidance, which could benefit up to 100 people. Von Hippel-Lindau disease (VHL) is a rare genetic condition caused by a mutation in the VHL gene.

2024年12月29日 · Charity for people living with von Hippel Lindau (VHL) syndrome and similar genetic conditions. It offers education, support and advice including a free to download handbook written in plain English with up to date information on diagnosing and treating VHL. For information on support groups, email the organisation.

2020年12月10日 · Read the guidelines from 2018 on VHL Screening presented by Dr Richard Sandford, Eamonn Maher and Fiona Lalloo. VHL should be suspected in individuals with or without a family history of VHL who have: • retinal angioma, especially in a young individual • spinal or cerebellar hemangioblastoma • adrenal or extra-adrenal pheochromocytoma