Greetings -

I hope I am not treading on ANYONE's toes here by offering, but I've
noticed that the Butterfly Children forum does not have many posts
lately, they have become quite rare, and I just wanted to share that
there is a group of almost 50 over at EB Force for Action that posts
regularly.

EBFFA has a variety of members: people who have a family member (or
members) with EB, people who have lost someone with EB close to them,
and a few people who have learned about EB in the last year or two and
just want to help (and are). Positive energy, and empathy, and kindness
are what EBFFA can offer. It's not moderated, but everyone tends to
mind their p's and q's. This kind of a forum might be comfortable to
you, or it might not. You're welcome to check it out if you wish to do
so.

Again, this is not to say that Butterfly Children is not a good forum or
a useful forum in ANY way - it is, which is why I have been a member
myself. I only offer the option for those who might wish to check out
EBFFA at some point.

Very best wishes, Gena

P.S. Some of the things I am currently working on are National EB
Awareness Week (with both DebRA and EBMRF), a video in the works about
EB and discrimination, and DebRA International's goals to build
dedicated EB units for patients in the Eastern Bloc and the Middle East,
where things are even more challenging for EB families than they are in
North America.

http://health.groups.yahoo.com/group/EBForceForAction/
<http://health.groups.yahoo.com/group/EBForceForAction/>



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