Our online discussion is at http://vhl.inspire.com Please join us there and join the conversation!
If you need some help getting started, don't hesitate to write to Gale, ussouth at vhl.org (the moderator). She will be glad to help you.
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 in the past.
There is also a place to create your own "journal" (sometimes called a "blog") and tell us about yourself if you wish. You can upload a photo (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. Address it to webmaster@vhl.org
We invite you to participate!
Go to http://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.
One of our primary motivations in moving to Inspire.com is its very serious attention to security. Read the PrivacyPolicy to get all the details. Your address and personal details can be kept as private as you wish. You can choose to share selected bits with other members. We recommend that you NOT make any of your personal information "public".
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 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? If not, click to continue
Choose a language: English
German Spanish
French Danish Swedish Norwegian Japanese
These are separate services where the entire discussion is in the language
specified. French and Spanish are housed a YahooGroups.
- The French service
is moderated by members of VHLFA, VHL
France, and Alliance Familiale VHL du Canada, especially Guy
Allegre and Gilles Brunet.
- The Spanish group is moderated by
Jesusa "Susi" Martinez, President, and Dr. Karina
Villar of our Affiliate group in Spain with help from Pierre Jacomet of Chile.
The German, Scandinavian, and Japanese services are similar, but use different technology:
- The German service is run by our
VHL affiliate in Germany and Switzerland, moderated by
Gerhard Alsmeier.
You will find it at http://www.hippel-lindau.de
- The Scandinavian group is moderated by Vibeke and Richard Harbud. It has
a choice of interface in Danish,
Swedish, Norwegian, or English. You will find it at http://www.vhl-danmark.dk
- There is an "international" section in each of these Forums where English
is the primary language.
- The Japanese group is moderated by M. Shinkai and Hanako Suzuki. You will find it at http://www1.odn.ne.jp/vhl_japan
Follow the directions to register and join the conversation.
When you sign up for the discussion, they will send a message to your e-mail
account to confirm that they have your e-mail address right. In order to
complete your registration you have to respond to the message. It should arrive almost immediately -- just go look for it when it tells you the message has been sent.
This is to ensure that you are registering yourself, and that no one is signing
you up without authorization from you. If you do not receive the message, it may have been stopped by your spam-catching software. Check in your "bulk" file or suspected spam.
Now you're all set!
In Inspire, go first to Messages and read the Welcome message. This will help you get started.
At the top of the page are the major sections. You will want to explore Welcome, Discussions and Journal.
We welcome your comments, both positive and negative. Please report all technical
problems to Gale or to webmaster@vhl.org We want you to be comfortable
and successful in our interactive services! |
