This new, more modern format allow us not only to have interactive conversations on particular topics, but to organize the conversation so that newcomers can easily get up-to-speed, and so that we can find topics that have been discussed before.

There is also a place to create your own "journal" (also known as a “blog”) and tell us about yourself. You can upload a photo if you wish (or not if you prefer not to). If you want to post a photo but don’t know how to do it, you can send a photo to the office and one of us will assist. A journal or "blog" (short for weblog) is a kind of online diary where you can talk about anything you wish.

We invite you to participate!

Go to vhl.inspire.com to go directly to the VHL group. Follow the instructions to join the group. You will need to confirm your e-mail address by replying to an e-mail before you can log in and participate. You may want to print out a copy of the Quick Start Guide to help you in the beginning. It explains some of the key differences from the Yahoo group to ease transition for current members. You will find the Guide at vhl.org/support.

One of our primary motivations in moving to Inspire is its very serious attention to security. Read the PrivacyPolicy to get all the details. Your address and personal details are not shared with anyone, not even with us.

Inspire will work with VHLFA to notify you of clinical trials that you might want to consider. Again, your information is not passed to researchers or pharmaceuticals, it is up to you to choose whether or not to contact them.

Please do not put your personal details into the messages themselves. The content of the messages can be seen by non-members as well as members. To make direct contact with another member of the group, send them an invitation to become a “friend”. Once you have done this, and the other person has agreed to become your “friend,” you can send direct messages to one another within the system, without knowing each other’s e-mail addresses.

Prefer another language? Click here for German Spanish French Danish Swedish Norwegian Japanese

Now you’re all set!

In Inspire, go first to Messages and read the Welcome message. This will help you get started.

Every day you will receive an e-mail message, telling you what has changed. You choose what to read.

At the top of the page are the major sections. You will want to explore Discussions and Blogs.

Click Surveys to add your opinion to the polls.

We welcome your comments, both positive and negative. Please report all technical problems to Gale or to vhl@inspire.com We want you to be comfortable and successful in our interactive services!

Y’all come! http://vhl.inspire.com

As printed in the VHL Family Forum 15:1, January 2007, revised April 2008. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.