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.

2011 Projects of the Spanish VHL Family Alliance

Written by Karina, published 5 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 the Health Ministry, which we received, but it was communicated to us when we did not have time enough for printing the manuals and finishing the project in time. We printed about 2,500 manuals, but we had problems distributing them to every center before the end of the project.

We recently received another partial subsidy (from Cajamar Bank), and we are going to send the manuals to the health centers especially in small communities. Susi has selected centers based on where the manuals will find patients most in need of information.

We have also received a communication about a subsidy from the regional government of Castilla-La Mancha, which we will dedicate to:
- New information leaflets. We are already using the new design.
- We are planning to do a compilation of the best articles from VHL Family Alliance magazine, and make a mini book.
- Website maintenance.

We are also planning to write a report to a special government official to ask for help referring us to doctors who are familiar with VHL. For this, I need all those people who have been denied a request for a referral and wish to help to send me the denial of their request for referral given by their community's Inspection Service. Legally, we know we can get it, and this government official’s help could be a game-changer in getting people the attention from experienced specialists.

I was planning to set up a section for "rare diseases" in general, where I can post everything we have so far about Spain, and it can also be of help to other organizations. We have already started compiling the archives.

We have posted an interview in our website which a local TV station (Tele Toledo) did on us www.alianzavhl.org/index.php?option=com_co... (at the end of the page, you have to click to play it).

I am also posting a link to the presentation I did on this disease last year in the journalist day organized by the Roche Institute. It is shocking, but be aware that I was talking to journalists and I wanted them to publish about this, so I showed them the worst consequences of the disease to get their attention (and successfully, because they wrote about this in several media for more than a week) www.institutoroche.es/web/flash/periodista...

Susi keeps coordinating different actitivies to collect funds www.alianzavhl.org/index.php?option=com_co... .

The principal objective is to collect enough money to subsidize the VHL Congress in Madrid 2014, and in second place, to co-finance investigation projects in our country (or in others, if non arise here).

I embrace you, happy summer, and thanks to all who are contributing. At the end we are going raise a mountain that will be seen from the space.

Kind regards,

Written by Karina, published 5 months ago.

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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 and the Internet
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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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    Presentation meeting Wouwse Tol 01-10-2011
    topic, published 6 days ago

    show transcript

    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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    I'll know soon
    topic, published about 1 month 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.
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    VHL in the news
    topic, published about 1 month ago

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    Article in the most recent EURORDIS newsletter on VHL:

    and the Sept. 2011 VHL Family Alliance newsletter:

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    Other sources of info on VHL..
    topic, published 2 months 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
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    Just to Know
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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)
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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
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    Full Text article from European Journal of Human Genetics:

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    ELST Endolymphatic sac tumor
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