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.

Educating and Empowering People by VHL Family Alliance published 4 months ago

An empowering message full of suggestions for activities.
I just returned from the 9th International Medical Symposium on von Hippel-Lindau, this year held in Rio de Janeiro, Brazil, hosted by the Brazilian National Cancer Institute (INCA) and chaired by Dr. Jose Claudio Casali da Rocha, head of the Brazilian National Tumor Bank, and co-chaired by Dr. Eric Jonasch, Genito-Urinary Oncologi...

My personal pathway, my strength ... by lolea9 published 6 months ago

LIVING WITH VHL (Von Hippel-Lindau) VHL is an autosomal dominant gene, a tumor suppressor. In the general population, this gene does its job and makes a protein that suppresses the development of any tumors as they arise. In my case, this gene is defective. Thus, damage of any kind arises at different rates and in different organs. VHL affects mainly the following areas: pancreas, kidney, cereb...

2011 Projects of the Spanish VHL Family Alliance by Karina published 8 months ago

This message is especially for Gerhard and other colleagues from other associations. I had had the idea of writing it after receiving a message from Gerhard where he requested basic information about the Spanish VHL Association.

It was 3 years ago when we decided to initiate a project called "Every health center should have the VHL Manual". We applied for a subsidy from th...

VHLFA Annual Meeting and Conference 2011 by VHL Family Alliance published 8 months ago

Jonasch - Clinical Trials and New Directions in VHL from VHL Family Alliance on Vimeo.


From VHL Family Alliance Director Joyce Graff:
"The Houston meeting was wonderful! Some 70 people met at the M.D. Anderson Cancer Center to hear 8 outstanding speakers and exchange storie...

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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    vhl screening
    topic, published about 1 month ago

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    I am 26 years old. my mother has VHL disease since my birth. since she had surgery ​​three times. I have two older sisters. 30 and 33 years. so far none of us has symptoms. we had a screening when younger. I was 12/13 . I didn't have any test later. why? is it to me to ask for? from whom? ...

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    1.Gegen eine Krankheit kämpfen (if a personal fight) 2.Gegen Krankheiten kämpfen (if medical prog...
    topic, published about 1 month ago

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    Hallo Zusammen!
    Ich heiße Nico, ich bin neu hier, und, um es kurz zu machen: bei mir wurde die Krankheit im Dezember 2010 diagnostiziert (es ging mir aber schon seit 2007 sehr schlecht) Ich wurde wegen dreier Tumore operiert (Nervenwurzel, Nebenniere und Niere). Es war sehr schlimm, weil ich zwi...

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    topic, published about 1 month ago

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    Friday 10th of February 2012, Paris
    For more details click here: http://bit.ly/wktLTg

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    document, published about 1 month ago

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    L’Assemblée Générale de notre Association se tiendra le :
    Vendredi 10 février 2012 - de 10 H à 16 H 30 Salle Primevère - Plateforme Maladies Rares - HOPITAL BROUSSAIS – 96 , rue Didot – 75014 – PARIS

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    Genetic test and VHL
    topic, published about 1 month ago

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    This question just came through email. Can anyone recommend some good resources to answer this question?

    "I want to know if it is possible a Von Hippel Lindau disease with NEGATIVE
    genetic test."

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    Presentation meeting Wouwse Tol 01-10-2011
    topic, published 3 months ago

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    Hi all,

    I like to share (and especially for the Dutch people) the presentation I gave during our meeting on 1 oktober this year. It gives an overview about the development of internet in relation with VHL and the shift from an information only media to a more social media. And it indicates ...

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    Meet Rachel Giles
    topic, published 3 months ago

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    Meet Rachel Giles, a physician and VHL researcher and head of the VHL clinical care program in the Netherlands.


    Happy New Year!

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    10th International VHL Medical Conference
    topic, published 3 months ago

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    Organized by the VHL Family Alliance for late January 2012, visit their website for more details and find the conference program here:


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    VHL and the Internet
    document, published 3 months ago

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    Development of internet in relation with VHL and the shift from an information only media to a more social media.

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    I'll know soon
    topic, published 4 months ago

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    I just discovered this site while doing some VHL research. I haven't been diagnosed yet. But I'm about 80% sure I have VHL. My dad's mom, my dad, his sister, and her son all had (or have) VHL and i know there is a 50% chance of it being passed down from my dad.
    I am 21 years old, and lucky to s...