Von Hippel-Lindau community

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Von Hippel-Lindau community news

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    Probe ablation as salvage therapy for renal tumors in von Hippel-Lindau patients: The Cleveland Clinic experience with 3 years follow-up.
    News, published 3 months ago

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    BACKGROUND: To evaluate the efficacy and safety of probe ablative therapy as salvage treatment for renal tumor in von Hippel-Lindau (VHL) patients after previous partial nephrectomy (PN).

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    Ana quiere seguir trabajando, pero llegar hasta su puesto es imposible
    News, published 5 months ago

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    Mi hermana tiene una enfermedad rara, oncológica, progresiva, altamente incapacitante e invalidante, llamada VHL (von Hippel-Lindau). Tiene 37 años, y desde que fue diagnosticada en 1995 (con 21) ha sufrido 4 neurocirugías, una cirugía por cáncer renal, ha perdido la visión de un ojo y la audición de un oído. La última neurocirugía

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    Percutaneous radiofrequency ablation of renal cell carcinomas in patients with von Hippel Lindau disease previously undergoing a radical nephrectomy or repeated nephron-sparing surgery.
    News, published 6 months ago

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    Abstract

    Background Radiofrequency ablation (RFA) is accepted as a minimally invasive treatment of renal cell carcinoma (RCC). However, RFA is not fully evaluated for treating RCC in patients with von Hippel Lindau (VHL) disease who cannot undergo surgery due to serious postoperative morbidity or mortality. Purpose To evaluate the role of RFA of RCC in patients with VHL disease previously undergoing renal surgery. Material and Methods Percutaneous RFA...

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    Accrington woman tells of battle with rare disease
    News, published 6 months ago

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    Sandra Kenworthy, 41, only discovered she had Von Hippel–Lindau (VHL) disease in 1996, while seven months pregnant with her third daughter...

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    Soignée pour une maladie rare, elle se bat contre la douleur et la Sécu - Le Progrès
    News, published 6 months ago

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    Von Hippel Lindau disease: A clinical and scientific review
    News, published 7 months ago

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    European Journal of Human Genetics advance online publication, March 9, 2011. doi:10.1038/ejhg.2010.175

    Authors: Eamonn R Maher, Hartmut PH Neumann and Stephane Richard (Source: European Journal of Human Genetics)

    Abstract

    The autosomal dominantly inherited disorder von Hippel–Lindau disease (VHL) is caused by germline mutations in the VHL tumour suppressor gene (TSG). VHL mutations predispose to the development of a variety of tumours (most commonly retinal and central nervous system haemangioblastomas, clear cell renal carcinoma and phaeochromocytomas). Here, we review the clinical and genetic features of VHL disease, briefly review the molecular pathogenesis and outline clinical management and tumour surveillance strategies.

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    VHL-Rundbrief Februar 2011/VHL Germany Feb. Newsletter
    News, published 9 months ago

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    Direct link to VHL Germany's Feb. Newsletter, use Google Translate to see what's happening in Germany in your language!

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    New England Family Fights Rare Diagnosis - WCVB-TV
    News, published 9 months ago

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    BOSTON -- Andrew Cayer, 25, was born with Von Hippel-Lindau, or VHL, a rare genetic disease where the body grows life-threatening tumors.One in 32,000 people worldwide has it, but according to experts, most don't even know it. Cayer didn't know he had the disease until his symptoms started at age 18.....

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    Phase II Study of Vandetanib in Individuals With Kidney Cancer
    News, published 9 months ago

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    Status: Recruiting, Condition Summary: Renal Cancer; Von Hippel Lindau


    This study will examine the effectiveness of an investigational drug called ZD6474 (also known as vandetanib or ZACTIMA). Vandetanib is an experimental drug that is designed to prevent the growth and development of new blood vessels on tumors and to prevent the direct growth of cancer cells. It has been tested in a number of clinical trials on adults with cancer, but the U.S. Food and Drug Administration has not specifically approved it as a cancer treatment. The purpose of this investigational study is to better understand how vandetanib affects humans who have kidney cancer related to von Hippel-Lindau (VHL) disease, and to develop tests that may improve researchers' understanding of kidney cancer and its effects.

    Volunteers must be at least 18 years old and must have been diagnosed with kidney cancer related to VHL. Candidates must have a life expectancy greater than three months and must have at least one measurable renal tumor for study purposes. Candidates may not be receiving any other investigational agents or have been treated with an investigational drug within the past four weeks. Candidates who have had surgery, chemotherapy, or radiotherapy within the past four weeks will be excluded from the study. Candidates will be screened with a physical examination and medical history.

    During the study, participants will receive an oral dose of vandetanib once a day for 28 days (a treatment period known as a cycle). Participants will need to return to the National Institutes of Health every two weeks on the same day of the week as the first dose of vandetanib for a series of tests and procedures, including blood and urine tests and an electrocardiogram. Every 12 weeks, computerized tomography (CT) or magnetic resonance imaging (MRI) scans will be done to assess the size of participants' tumors. Participants whose tumors do not grow and who do not have unacceptable side effects may continue to receive vandetanib to maintain the current condition, until researchers conclude the study....

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    Wisconsin woman battles, raises awareness for VHL disease - WXOW.com
    News, published 9 months ago

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    Eau Claire (WQOW)- As a television show sheds light on a rare disease, a local woman opens up about her battle with it. In recent episodes of Grey's Anatomy a patient is fighting Von Hippel Lindau.  The disease has power to cause tumors in almost any part of your body. If undetected, those tumors could lead to vision loss, or heart attack and stroke.......