New Media For You

We are working with a number of new technologies in an effort to serve you better.  We will appreciate your feedback

Radio - Podcasts

The Powerful Patient has been very successful, reading more than 20,000 people each week throughout 2008.  We are moving to a shorter format in 2009, to make the programs easier to use as Podcasts.  There is a podcast menu on the Powerful Patient website.  We are in the process of listing with iTunes and other podcasting sources, so we should be showing up there by the end of January. 

Facebook - MySpace

We now have more than 1000 members in our VHL group on Facebook!  This is “social networking” - helping to raise visibility among your friends.  You can join the group there, and can create your own “cause” page to gather donations for VHL.  Several people have already created “cause” pages.  It is also possible to link your Firstgiving page into Facebook (thought currently "causes" work better there.) 

Inspire

Where Facebook is a place for the general public, Inspire is a place for people who are more directly affected by VHL to discuss the deeper issues around VHL itself, both medically and emotionally.  It’s a wonderful place to ask questions, find support, and know you are among folks who know what you are going through. Join us at Inspire.

YouTube

With the new YouTube contest, our presence on YouTube will be growing this spring, working toward having a strong presence in time for International VHL Day on May 9.  See contest rules, and help us raise awareness and build momentum.

Webinars

We began a series of Webinars (seminars on the web) which give us the ability to have the slides for you to watch as you listen to the audio.  There are recordings available on the website that you can watch.  This is the list as of January - watch for more!

VHL 101
Pre-implantation Genetic Diagnosis (PGD)
Report from Copenhagen
Report from Kidney Cancer Symposium

Coming up! - participate in the live session

Jan 29 - Pregnancy and Family Planning, with Jessica Everett, Genetic Counselor, U of M
watch http://vhl.org/meetings for more

Feedback

We would like to hear which media types work best for YOU.

Please fill out the survey at vhl.org - Thank you!

As printed in the VHL Family Forum 17:1, January/February 2009. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.