2019 International Exstrophy Conference / June 28-30, 2019

Registration is closed.

Questions? Contact [email protected]

Let's meet in Los Angeles June 28-30, 2019!

Hotel information now available. Book today!

Hosted by Children's Hospital Los Angeles in partnership with Association for the Bladder Exstrophy Community (A-BE-C).


Thank you to our sponsors!

At a Glance Schedule

Coping is the theme of this year's gathering. A range of conference sessions will be focused on mental and emotional wellness. 

For more information about the conference check out answers to frequently asked questions at Conference FAQs.

Friday, June 28, 2019

6:00 – 8:00 PM  

Welcome Registration & Pizza Party

The Hollywood Hotel, 1160 North Vermont Avenue, Los Angeles, CA 90029  

Saturday, June 29, 2019 

Conference Sessions 8:00 AM - 4:00 PM Marion and John E. Anderson Pavilion, Children's Hospital Los Angeles

Session topics will include: 

  • Coping with Exstrophy
  • Breakout sessions with topics focused on various groups: Infants, School age, Tweens and Teens, High Schoolers, Adults, Parents, Siblings
  • Transition to Adult Care
  •  Navigating School System
  • Disclosure
  • Substance Abuse
  • Sexuality
  • Depression
  • Leaving for College
  • How to Cope With Your Sibling Having Exstrophy


*The day will also feature an afternoon field trip for kids and an evening family event!

Sunday, June 30, 2019

8:00 AM - noon 

Marion and John E. Anderson Pavilion, Children's Hospital Los Angeles

The day will feature:

  • Pain Panel: Coping with Pain
  • Coping Strategies
  • Guided Meditation
  • Yoga
  • Wellness Fair (coping kits, therapy dogs, massage and much more!)
  • Talent Show (contact [email protected] to sign up as a performer) 

Conference site: Children's Hospital Los Angeles

Directions

Conference hotel: The Hollywood Hotel

Book by May 29, 2019 for discounted room rates.

With a metro station just across the street and many must-see California landmarks only minutes away, The Hollywood Hotel is an iconic boutique destination and the most accessible of all Hollywood hotels. 

Contemporary accommodations meet quintessential Hollywood glamour at Hollywood Hotel, Los Angeles’ premier vacation destination. Featuring beautifully appointed guest rooms and wonderful hotel amenities, from the sunny, sparkling pool to our always happening Route 66 Bar & Lounge, the historic Hollywood Hotel reflects classic movie star style in every sense. 

The Hollywood Hotel is a short ½ mile walk to Children’s Hospital Los Angeles.  

1160 North Vermont Avenue, Los Angeles, CA 90029

Conference Rates

Use code: CHLA Bladder Group

  • 1 Queen Bed - $199.00 plus 15.5% Occupancy Tax and $ 2.00 Daily Assessment Tax 
  • 2 Queen Beds - $219.00 plus 15.5% Occupancy Tax and $ 2.00 Daily Assessment Tax 
  • Additional Guests - $40.00 per extra person (Children under 17 are free)  

Reservations at these rates must be made by May 28, 2019. Reservations after May 28, 2019 will be based on a first come, first served basis and established rates will apply. 

Contact the hotel directly to make a reservation.  

Mandy: [email protected] Tel : 310-701-8828 Cecile: [email protected] Tel : 323-315-1832  


BE a sponsor

A-BE-C is the only organization worldwide that is supporting people affected by bladder exstrophy. 

The conference offers many opportunities to connect with participants and speakers. Details are included in the sponsorship package. We look forward to another exceptional year with your support.

Download Sponsorship Package

Things to See and Do in Los Angeles

Los Angeles is one of the top travel destinations in the United States leaving no shortage of things to do and see. A simple web search turns up hundreds of options, but if you’re thinking of extending your stay consider visiting a few of our favorites. 

ToursUniversal Studios Hollywood • Hollywood Hills • Movie stars homes • Griffith Park ObservatoryWalk of Fame • Sunset Strip • La Brea Tar Pits Sony Studio Tours 

Beaches • Santa Monica Bay • Will Rogers • Venice Beach & &oardwalk • Santa Monica Pier • Manhattan Beach - • Playa Del Rey • Malibu/Zuma Beach • Annenberg Community Beach House  

Theme Parks:Disneyland California Adventure Six Flags Magic MountainKnott’s Berry Farm LegoLand  

MuseumsHollywood Wax MuseumThe Getty CenterCalifornia Science Center Travel Town MuseumKidspace Children’s Museum Natural History MuseumLos Angeles County Museum of Art The Broad Queen Mary Madame Tussauds Wax Museum 

Shopping • Beverly Hills • Rodeo Drive • The Grove and Original Farmers Market • Olvera Street • 3rd Street Promenade in Santa Monica • Universal City Walk 

Other: Los Angeles Zoo • Venice Canals Walkway • Hike to Hollywood Sign in Runyon Canyon Park • Tapings of Price is Right, Ellen Show, etc • Hollywood Bowl for summer concerts The Greek Theater for concertsWalt Disney Concert Hall