Fundació Puigvert designated as a global Center of Excellence in bladder and cloacal exstrophy, the only accredited center in Europe
- Fundació Puigvert has been supporting children and families living with this condition for nearly 50 years.
- The program recognized by the Association for the Bladder Exstrophy Community is led by Fundació Puigvert and developed in collaboration with Hospital de la Santa Creu i Sant Pau, with whom it shares clinical activity.
Fundació Puigvert has been accredited as a new global Center of Excellence in bladder and cloacal exstrophy by the Association for the Bladder Exstrophy Community (A-BE-C), an international reference organization that promotes access to the highest quality medical care for children and adults with bladder and cloacal exstrophy. The accreditation was received on July 25 by Dr. Anna Bujons, Head of the Pediatric Urology Unit at Fundació Puigvert and President of the Iberoamerican Society of Pediatric Urology, during the A-BE-Cs annual conference held in Boston (USA). This recognition makes the Fundació the only Spanish and European center, and one of the thirteen centers in the world with this distinction.
Dr. Anna Bujons:
“This is a highly significant milestone for our center and for the entire team. It represents years of rigorous work, commitment to quality care, and support for families living with such a complex malformation as bladder exstrophy.”
“This recognition strengthens our vocation for public service, proximity, and excellence. It is an incentive to continue improving, sharing knowledge, and supporting families throughout the entire care process.”
What is bladder and cloacal exstrophy?
Bladder exstrophy is a severe and very uncommon congenital malformation, considered a rare disease, affecting approximately 1 in every 30,000–40,000 births. It occurs when the urinary bladder does not close properly during embryonic development. As a result, the baby is born with the bladder exposed outside the abdomen. This condition not only prevents normal urine storage but it is also often associated with abnormalities in the structure of the genitals, affecting both appearance and long-term functionality.
In the most complex cases, an even more severe and uncommon malformation occurs: cloacal exstrophy. In these cases, part of the intestines are also exposed outside the abdomen.This condition, exceptional and highly complex, requires highly specialized medical and surgical care.
Children with exstrophy often undergo several surgeries throughout childhood and adolescence with the aim of reconstructing the bladder and urethra, preserving kidney function and improving urinary continence, among other goals. This is accompanied by close monitoring from a multidisciplinary team addressing not only urinary and digestive functions but also the emotional well-being and quality of life of the patients and their families.
What is A-BE-C and why is this recognition so important?
A-BE-C is an international non-profit organization founded by patients, families, and healthcare professionals that provides support, information, and global connection for people affected by bladder and cloacal exstrophy. A-BE-C’s Centers of Excellence program recognizes institutions that meet 10 rigorous quality standards, including specialized surgical expertise, a multidisciplinary approach, structured transition pathways, long-term follow-up, and direct engagement with families and patient associations.
Thus, Fundació Puigvert joins a prestigious international network that includes institutions such as Boston Children’s Hospital, Children’s Hospital Los Angeles, Children’s Hospital of Philadelphia (CHOP), Johns Hopkins Children’s Center, and Seattle Children’s, among others. During the conference held in Boston, A-BE-C’s executive director Pamela Artigas presented Dr. Bujons with the accreditation of Fundació Puigvert as a new member of this worldwide network.
Pamela Artigas:
“Receiving a diagnosis of bladder exstrophy can be an overwhelming experience for families, particularly given that many primary care physicians, gynecologists, and obstetricians may have limited familiarity with the condition.”
“The Center of Excellence program was established to ensure that patients and their families can swiftly access expert, comprehensive care of the highest quality.”
A consolidated and officially recognized trajectory, in collaboration with Hospital de la Santa Creu i Sant Pau
Since the creation of its Pediatric Urology Unit, the Fundació Puigvert has a trajectory of nearly 50 years in specialized care for patients with bladder and cloacal exstrophy. The program recognized by ABEC as a Center of Excellence is led by Fundació Puigvert and developed in collaboration with Hospital de la Santa Creu i Sant Pau, with whom it shares clinical activity within the framework of the Sant Pau - Campus Salut Barcelona. This collaboration ensures an integrated care environment, with access to highly complex pediatric and adult services.
Fundació Puigvert is already accredited by several official and international institutions for its expertise in this pathology:
- Member of the Clinical Expertise Units Network (XUEC) of the Catalan healthcare system.
- Accredited CSUR center (Center, Service and State Reference Unit), with the Hospital de Sant Pau, by the Spanish Ministry of Health for the treatment of bladder and cloacal exstrophy.
- Member of eUROGEN, the European Reference Network for rare and complex urogenital diseases promoted by the European Union.
The Pediatric Urology Unit as the core of the care pathway
The Pediatric Urology Unit of Fundació Puigvert is the central point of the care pathway for managing bladder and cloacal exstrophy. From this unit, an integrated multidisciplinary model is coordinated to support patients from prenatal diagnosis to adulthood. This approach involves gynecology, plastic and reconstructive surgery, general surgery, nephrology, andrology, traumatology, psychology, and advanced practice nursing, among others, depending on the needs at each stage of life.
The model is based on personalized, continuous, person-centered care that considers not only medical and surgical aspects but also psychosocial factors to ensure the physical, emotional, and social well-being of patients and their families. As a reference center, it treats patients from across Spain and also from other countries.