Von Hippel - Lindau Nachrichten der Gemeinschaft

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  von Hippel-Lindau disease: surveillance strategy for endolymphatic sac tumors.
  News, publiziert vor etwa 1 Monat

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  Abstract only 
  

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  Atteinte d’une maladie rare : une famille en quête de prise en charge à l’étranger
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  Le professeur Stéphane Richard de la faculté de médecine de Paris propose son aide à cette famille.  
  

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  10th International VHL Symposium 2012 Videos
  News, publiziert vor 3 Monaten

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  The 10th International VHL Medical Symposium, organized by the MD Anderson Cancer Center and the VHL Family Alliance, took place at the Hotel Zaza in Houston, Texas on January 26th to 29th, 2012.

  The first day there were sections on metabolomics, cilia centrosome regulation, epigenetics, VHL proteostasis and non VHL hereditary renal disorders, as well as advances in current treatment options.
  

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  Evaluation of the Natural History and Management of Pancreatic Lesions Associated with Von Hippel-Lindau
  News, publiziert vor 4 Monaten

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  Recruiting
  

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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, publiziert vor 10 Monaten

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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, publiziert vor 12 Monaten

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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.
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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, publiziert vor etwa 1 Jahr

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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
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  Von Hippel Lindau disease: A clinical and scientific review
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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.