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~Snail Mail Support Network~
EB Info
World is proud to announce that our Snail Mail Support Network is now in place.
What does that mean? It means we've compiled the names,
addresses and telephone numbers of people from all walks of life across the
world with all forms of EB.  If you are a
patient or a parent who would like to
make new friends with EB and correspond with them via regular USPS mail, we can give you the names of people who would like the
same. New parents can be matched with families close in proximity or dealing
with the same type of EB, depending on their preference. Children can talk to
peers that are going through the same thing.
Courage is
often defined as walking the lonely road and surviving when we think
we never will. Some of us do it alone which is scary. Others are
fortunate to link hands with someone familiar with the path. That
is where you come in. If you're willing to guide or be a
friend to other parents or patients along the coping path
you followed we invite you to volunteer to serve in our
Peer-to-Peer network.
We realize not everyone
has constant access to the internet and sometimes you just need to hear an
understanding voice. If you would like to meet other patients, other parents, mentor a young person, provide
advice and comfort to new families with EB or talk with other parents who have
lost children to EB please send us the following information and we'll add your
name to our growing network.
Please Note: The
information you are supplying will only be distributed to those
requesting someone to talk to. It will not be listed on the internet
anywhere, as a matter of fact, the info you will be supplying will
basically be sitting on an Excel file on the webmaster's computer,
so you can feel safe!
If you want to submit your information for others to contact you... click
here
If you would like to request a contact...click
here
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