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ABC is an international support network of individuals with
bladder exstrophy (includes classic
exstrophy, cloacal
exstrophy, and epispadias),
local parent-exstrophy support groups, and health care providers
working with patients and families living with bladder exstrophy.
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- 2009 ABC Conference Survey!
We are in the early stages of planning next years
conference and we have two possible locations. Please
take the time to fill out this survey as to your
preference between Dallas, Texas and Pittsburg,
Philadelphia.
- 2007 3rd International Conference for
Families Living with Exstrophy & Epispadias
DVD
If you could not attend the 3rd conference, now
is your chance to
see what you missed in this DVD ! Or if you attended
the conference,
get the information you may have missed or did not
write in your notes. The health professionals and
adults with exstrophy discuss Tissue Engineering,
Men’s Health Issues, psychosocial issues,
Urinary infections, and Failed bladder exstrophy.
Speakers included: Richard Grady, MD, Bradley Kropp,
MD, Ranjiv Matthews MD, Michael Mitchell, Barbara
Neilson, MSW, Res. Dip. S.W., RSW, Byron Joyner
MD, William Reiner MD, Jimmy Simons, James Cole,
Ginger Keller-Ferguson, Jessica
Croshaw, Julia Beckers, and Letizia Cantani.
Coming soon! Price
yet not determined
- Replay
of Live Exstrophy Webcast, Wed 11/7/07 at 3 p.m.
EST
Replay of Live Interactive Discussion on
Exstrophy of the Bladder
A complex combination of disorders that occurs during
fetal development
November 7, 2007 at 3:00 PM EST (20:00 UTC)
From Children's Hospital Boston
Urology: On Wednesday, November 7, 2007 at 3:00
p.m. EST, Children's Hospital Boston's Center for
Bladder Exstrophy Care & Support team will host
a live interactive discussion on exstrophy of the
bladder, a complex combination of disorders that
occurs during fetal development. Diagnosis, surgical
treatment, and lifelong management will be discussed
in addition to excerpts of a complete repair procedure,
taped earlier this year. Also, a family from the
support group will share their perspective on having
a child with exstrophy of the bladder. This 60-minute
Webcast is part of Children's ongoing effort to
bring advanced care and technology to specialists
 “THE
NIGHT BEFORE” - now available on DVD!
A short film written by James Cole, based on his
real-life experience with exstrophy is now available
on DVD for purchase. Click
here for more information and ordering.
-
 "We
are bound together...by a condition that significantly
impacts our lives". This year consider
donating
to our worth-cause! We help families connect
and keep them informed. Your donation will
help us continue with our efforts and help us expand
our services such as our International Conference
for Families Living with Exstrophy & Epispadias
- Join
our FREE Bladder Exstrophy Email
Listserve/Bulletin Board
- DVD Set of 2nd
ABC Conference for Families Living with Bladder
Exstrophy Order
Here!!!
- A
Story About You....and the Boo-Boo on Your Bladder
This book is an eight page
picture book written for the young child ages 3-6. Written
by a fellow ABC member, Cathy Brehm. Click
here
for more information and to order this book on-line.
- "This
is Me"
 This
book is geared specifically for 5-10 year olds to
discuss bladder exstrophy, school issues, catheterization
(through a Mitrofanoff) and how to discuss their
condition with their friends if they choose to do
so..
Click
here
to order..
- Attention: Professionals
and Parents of Newborns born with Bladder Exstrophy:
Check out our ABC packet of information for downloading
(PDF Version)
- INVITATION
For participation in a genetic research study
into the possible link to bladder exstrophy.
(Previous
entries)
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