Day 227 Shout out!

Thought it would be a good idea to point you in the direction of Joanne Zeis, she also has a blog called essential behcet's. You can find her newest post about flu shots at the link below and also on my blog under "Some sites for info on Behcet's" . I always find her reference articles very useful...Thank you Joanne!

http://behcets.blogspot.com/

You can also visit Joanne's website at www.behcetsdisease.com. Joanne states on her website that;
"Trying to find appropriate treatment is hard enough. Finding well-written, comprehensive information about Behcet's disease shouldn't be one of your frustrations."
She is spot on with this statement. Unfortunately I don't provide 'well-written, comprehensive information', however I will give you a good sob story anytime. Thanks to Joanne and everyone else that puts in the effort to help all of us sufferers. Did I mention she has written books on Behcet's? Make sure to check out the "Books" link on her website too.

From reading through the essential behcet's blog today I stumbled across a post;

From Cindy:

I have some good news for us all. Over the last two years I have been working with the VCRC (Vasculitis Consortium Research Center) to add Behcet's Disease to their database. Well I would like you to all know that this has now officially happened.

What this means to the Behcet's community....
- We can now register our names to be informed and included in any new research projects.
- Researchers don't want to take on rare diseases because it is too hard to find participants.
- With many BD patients on the data base, a researcher can then apply for more funding because he has a base of people to start off the study.
- Government funding is also more readily available
- Support groups can then help fund some of these studies.

It is SO very important that you register. It is just a short form which will take about 3 minutes to fill out. It does not hold you to participate in any study unless you wish to.

PLEASE take a few moments right now and join the registry. Let them know that Behcet's is not as rare as they think. With all of us registered, they will be able to see what a large group we have. Also send this to any others who have Behcet's Disease. It is not country-specific.

JOIN HERE: http://rarediseasesnetwork.epi.usf.edu/vcrc/registry/index.htm

So I registered...now it's your turn!