Revising the Handbook

May 2010

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Need more copies of the Handbook? We are happy to provide you with as many copies as you need of the 2005 edition, FREE while supplies last!

The 2005 edition of the Handbook is still the current version. The most important change since that edition is our address: we moved in 2006 to 2001 Beacon Street, Suite 208, Boston 02135. The website, telephone numbers, and e-mail addresses are all the same, but the postal address is different. The post office no longer forwards mail sent to the old Clinton Road address, so please make sure you have changed your records.

There is a 2009 edition of the Handbook at Amazon.com which updates our address but does not make any significant changes to the text.

We are currently working on updating the text, with a revised edition slated to appear in 2011. Since the Handbook is now in 11 languages, the changes planned for this edition will be modest, and will not be a full rewrite.

Our goals for this year’s revision are:

- enhance the pancreas and ELST sections
- review the screening protocol and get agreement world-wide, paying special attention to radiation, gadolinium, compliance and cost.
- update the Research section, talk about the new drugs coming out and where to get clinical trials info
- update the References to include new key articles

At the 2008 Symposium in Denmark we heard some very helpful reports evaluating the effectiveness of the screening protocol in affecting treatment decisions, and the challenges of getting people to show up for scans even when cost is not a factor.

We will appreciate hearing from you – your questions or concerns about anything in the Handbook, and your impressions of “what’s missing?” – what would you like to hear about in a future Handbook?

Again, the primary purpose of the Handbook is to inform you and your primary care physician about what VHL is, how it behaves, how to screen for the various issues that might arise, what symptoms to watch for, and the strategies that we have found work best in considering treatments.

We need to hear from patients and physicians how this is working – what else do you need from us to support you in doing it right on the first try? How can we support you in maintaining health and quality of life?

We need to hear from you!

Please send us your VOTE online for the slate of new Board members.

Go to Candidates Page.

And we want your FEEDBACK on the Handbook. (Respond to info@vhl.org.)

Need more copies of the Handbook? We are happy to provide you with as many copies as you need of the 2005 edition, FREE while supplies last.

As printed in the VHL Family Forum 18:2, May 2010. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.