Von Hippel-Lindau community

Von Hippel Lindau (VHL) is a rare genetic cancer syndrome, an alteration in the VHL-tumor-suppressor gene, which puts the individual at increased risk of developing tumors in various organs throughout life.

VHL National Meeting 2011 by VHL Family Alliance 5 months ago

MD Anderson Cancer Center has partnered with the VHL Family Alliance to host the 2011 VHL national meeting on June 18th at MD Anderson's Cancer Prevention Building. The meeting is open to pa...

Dutch VHL Annual Meeting by Dr. Rachel Giles 6 months ago

At our Annual Meeting on March 19, 2011, over 80 people gathered in the central town of Breukelen (Brooklyn’s name source). Volunteers provided free childcare for kids that varied in age from 8 weeks to 10 years. After the opening business meeting, our former chair, Evert Ruis, gave a short presentation on the history of our organization and showed photos of meetings dating back to 199...

A life not so simple by blabla55 7 months ago

When I was a teenager, I already had a hard family history and a life different from that of other teenagers.... Hello all, I am a teenager looking for answers or simply trying to understand...
My grandfather died of VHL disease before I was born... Then my father passed away when I was 4...

The year after, my mother took us for some tests to know whether the disease had been transmitted to...

Family history of VHL in Argentina by Virginia 8 months ago

My name is Virgina Batel, and I am 22 years old. I am suffering from VHL. I live in a city called Villa Constitución, in the Province of Santa Fe, in Argentina. Our family history started around 1999 when my father, Javier, was seen by doctors because he had a problem with his eyesight which was difficult to diagnose. After seeing many ophthalmologists in our city and others near it, ...

Patient groups

  • VHL Family Alliance International

  • German Assoc. for VHL Families

  • Danish Assoc. for VHL

  • Alianza española de familias de VHL

  • VHL France

  • A Magyar VHL Társaság

  • Dutch VHL Organization

  • VHL Contact Group U.K.

  • Argenina VHL Assoc.


Von Hippel-Lindau Recent Activity

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    Other sources of info on VHL..
    topic, published 9 days ago

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    The National Institutes of Health have Genetic and Rare Disease (GARD) Information specialists that may be able to help you find information.

    The GARD Information Center does not provide genetic counseling and does not offer diagnostic testing, referrals, medical treatment or advice.


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    VHL Family Alliance Newsletter September 2011
    document, published 23 days ago

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    Survey on pheochromocytoma and paraganglioma
    topic, published 23 days ago

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    From Joyce and Sue at the VHL Family Alliance:

    We have prepared a survey to gather information from anyone who has had a pheo, has an active pheo now, or thinks they might have a pheo but has not yet achieved a clear diagnosis. We need to hear your experience, and your feelings about how the ...

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    Just to Know
    topic, published about 1 month ago

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    Is this a good thing to keep everything for ourselves when we learn that a tumor is present and "Secret"? My mother and sister cry when the subject comes up. I'm scared and I do not know who to talk to ...

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    Cartel VHL (ES)
    document, published 2 months ago

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    Esquema de las principales zonas afectadas en la enfermedad de von Hippel-Lindau

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    von Hippel–Lindau disease: A clinical and scientific review
    topic, published 3 months ago

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    Full Text article from European Journal of Human Genetics:

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    ELST Endolymphatic sac tumor
    topic, published 5 months ago

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    In September 2009, I had surgery to remove an Endolymphatic Sac Tumor (also known as ELST). Unfortunately, though the symptoms began more than 15 years ago, it couldn't be seen in the screenings, so I have lost some hearing in that particular ear.

    In my other ear I have some symptoms, how...

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    topic, published 5 months ago

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    Just introducing myself; on the plus side - all my brothers and all my children are clear of this horrible disease. My father died of this at 43 and his mother at 36. I have had both my adrenal glands removed due to pheochromocytomas. I have multiple bilateral kidney cysts, fortunately not yet ca...

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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 pe...

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    Percutaneous radiofrequency ablation of renal cell carcinomas in patients with von Hippel Lindau ...
    news, published 6 months ago

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    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 morbi...