PUMA Priorities

Learn more about our exstrophy alliance, research programs and international missions below.

Exstrophy Alliance

Bladder exstrophy is a rare birth defect. On average, it occurs in about 1 out of every 50,000 live births. Because it is so rare, PUMA formed the Extrophy Alliance to pool our combined expertise and experience. The Alliance gives our pediatric urologists the opportunity to travel to each others institutions performing surgeries together.Averaging one case per month, PUMA members provide real-time intra-operative coaching at each step of a complex procedure and continually work on protocols that will lead to improved patient outcomes. The Alliance is a personal investment of time and funds by each member, making The Alliance one of our number one priorities.

Research Programs

As a collaborative team, we identified early the need for far more research into rare childhood urologic diseases. The goal of our cutting-edge research is to find new healthcare solutions. We place a priority on this with all five institutions meeting regularly to analyze current research programs and plan for up-coming ones that span many complex diseases. For a program to be initiated, four out of five institutions must participate ensuring we put the brightest minds together to find answers. With continued research, we hope to identify alternative ways to help treat these rare birth defects and improve lives for generations to come. To learn more about our latest, click below to read our recent scientific publications*

International Missions

International missions are an important part of what we do at PUMA. Partnering with skilled local surgeons, each mission is a one-week intensive immersion. Surgeons from both countries focus on the subtle steps involved
with each complex case, making real-time thoughtful adjustments in technique. Operating together we are able to coach and mentor each other, providing world-class health care to under-served communities.

Our members most recently traveled to Bangalore, India for a week-long mission trip. There we had the privilege of collaborating with pediatric urologists at Indira Gandhi Children’s Hospital. An important follow-up trip from the previous year, we were able to see our past patients to assess their progress and meet new patients in need of our help. Eighteen life-changing surgeries were performed on complex exstrophy-epispadias. In addition to the surgeries, teaching sessions were held for residents and fellows at Indira Gandhi Children’s Hospital, an important part of shared on-going education.