"Before today, my cousin had never met anyone else with bladder exstrophy. Watching her with other little girls just like her is amazing!" - 2016 conference participant
"All of the topics covered were very valuable for us." - 2015 conference participant
"Our son loved the breakout session! He's still talking about it. It gave him a huge confidence boost to talk with peers." - 2015 conference participant
"Presentations were inspiring and gave me a lot of good ideas. They also answered most of the question that I wondered about." - 2016 conference participant
We're putting the final touches on the complete agenda and confirming all the speakers, who will include:
Dr. Joseph Borer
Director of the Bladder Exstrophy Program and Director of Neurourology and Urodynamics at Boston Children's Hospital
Dr. Asseem Shulka
Director of Minimally Invasive Surgery, Department of Urology at Children's Hosptial of Philadelphia and Associate Professor of Surgery at University of Pennsylvania's Perelman School of Medicine
Dr. John Gearhart and Dr. Heather De Carlo
Dr. Gearhart is Professor and Director of Pediatric Urology at Johns Hopkins Childrens Center, and Dr. De Carlo is Assistant Professor of Pediatric Urology and Director of Pediatric Urology Research at the Johns Hopkins School of Medicine and the James Buchanan Brady Urological Institute
Dr. Paul Merguerian
Division Chief of Urology at Seattle Children's and Professor of Urology at the University of Washington
Educational sessions from experts, fun activities for children and siblings and opportunities to connect and collaborate in a relaxed setting are all part of the conference. The schedule will be coming out soon. Highlights include:
Pizza Party! A Kick-off Pizza Party for the whole family on Friday night
Session on Multi-Hospital Collaboration for Better Surgical Outcomes - Dr. Joseph Borer, Director of the Bladder Exstrophy Program at Boston Children's Hospital will share the impact of three hospitals have come together for for the Multi-Institutional Bladder Exstrophy Consortium, a unique research group dedicated to improving outcomes for children with all forms of exstrophy.
Session on Global Care of Bladder Exstrophy - Dr. Asseem Shukla, Director of Minimally Invasive Surgery in the Department of Urology at Children's Hospital of Philadelphia will present on how he and a handful of doctors have taken their vision of caring for children in India each year into a global movement, and how that work is benefitting all bladder exstrophy patients.
Session on Collaborating on Transitional Care - A facilitated discussion on the question: How can we -- as a community of patients, parents and physicians -- work together to provide a more collaborative approach to meet the transitional care needs of bladder exstrophy patients throughout their stages of life?
Breakout Sessions - Collaborate with your peers, other families and members of he medical community to make living with exstrophy better in childhood, as a teenager and at the stages of adulthood. There will be several facilitated breakout sessions for small group discussion.
Kid's Activity - An afternoon of bowling for kids attending the conference. Includes transportation
Children's Hospital of Philadelphia (CHOP) is hosting the conference on its campus in partnership with A-BE-C.
Sessions will be held at the Colket Translational Research Building on the main campus of CHOP at 3501 Civic Center Boulevard, Philadelphia, PA 19014
A big thank you and welcome to our first 2017 Exstrophy Conference sponsors. Coloplast is maintaining a long tradition of support to the bladder exstrophy community. Welcome to Safe n Simple, an innovator, developer and marketer of new medical products and to Verathon. Verathon's BladderScan® products are the standard of care for portable ultrasound bladder volume measurement. Funds raised from the Texas Bladder Exstrophy's Support Group's recent 3-on-3 Basketball Tournament are funding the kids events at the conference.
BE a sponsor
Attendees come to the annual International Exstrophy Conference from across the United States and around the globe to share their stories, meet doctors and professionals who can guide them in their exstophy journey.
A-BE-C is the only organization worldwide that is supporting people affected by bladder exstrophy. Approximately 350 people are expected to attend this year's conference and our speakers include world-renowned physicians from major hospitals. If you'd like to connect and support this community of people, become a sponsor!