As many of you know, last year we contracted with ClinicaHealth to host an online community for VHL members. More than 400 people have joined this online community -– it is a wonderful way to support other people who are dealing with VHL, to learn from their experiences with this disease, and to find support yourself.

If you haven’t been to our online community before, please check it out. You can find it at vhl.inspire.com It’s a place where you can read stories from people like yourself who are dealing with VHL, and post your own. You can post a question and hear answers from all over the world. If you see a conversation that interests you, please join and participate. The community is what we make it -– and your participation can mean so much to others who are coping with VHL.

Recently, ClinicaHealth changed its name to Inspire, and upgraded the software platform which powers our community. We have recently posted a “differences” document to help people moving from the earlier version of ClinicaHealth, and Inspire is building more documentation online.

For those of you who were used to the old ClinicaHealth community, there are lots of changes in the new platform. Change is never easy – especially when it involves computers. There are many important improvements, especially security features to keep our community safe. Both VHLFA and Inspire are committed to keeping this environment safe and comfortable for you.

We hope to see you soon at http://vhl.inspire.com Among the Journals, you will find Joyce’s journal from the Africa trip (in this issue).

If you have any problems with getting started, or in getting comfortable in the new version, please send an e-mail to our support team at Inspire. You can file a help request on the site by clicking on “Help” at the bottom of any page, or you can send an e-mail to team@inspire.com. They will respond back to you, usually within 24 hours.

Please feel free to send in your questions or ask for help. There are no “dumb questions” -- as my father used to say, “the only dumb question is the one you didn’t ask.” We learn from your questions how to make the system better for everyone. Beth from Inspire and Gale Lugo from VHLFA are ready and willing to help you. Write to ussouth@vhl.org or team@inspire.com

As printed in the VHL Family Forum 16:2, May 2008. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.