You Are Part of a Community
No one has to navigate bladder exstrophy alone. Through shared experiences, education, and connection, the bladder exstrophy community continues to support individuals and families around the world.
These listings are not an endorsement of any physician or organization. The information provided here is for resource purposes only.
No matter where you are in the world, you are not alone.
This page connects you to a global network of healthcare providers, organizations, and support communities dedicated to bladder exstrophy care.
Access to specialized care and support can look different depending on where you live — but across countries and continents, there are people working to improve outcomes, share knowledge, and support individuals and families navigating this journey.
Estrofia Vescicale Epispadia Odv
L’Associazione è nata nel Giugno 2006, da una forte esigenza dei pazienti e dei genitori per dare un sostegno umano a tutti coloro che vivono direttamente o indirettamente la patologia. Nel DNA dell’Associazione c’è la condivisione, il confronto di esperienze, l’aiuto reciproco e l’impiego delle nostre risorse per dare informazione e conoscenza a livello nazionale della patologia.
l’Association Française d’Urologie (French Urological Association):
Dr. Morgan Rouprêt
Professor of Urology, Member; European Association of Urology
Hôpital Pitié-Salpétrière in Paris, France
Clinique de l’Infirmerie Protestante à Lyon – 1-3 chemin du penthod Caluire et Cuire 69300 – Téléphone : 04 72 00 72 00 – Fax : 04 72 00 74 99
Dr. Vian, Urologic Surgeonat Infirmerie Protestante de Lyon
https://www.infirmerie-
04.72.00.71.10 (ou 71.15)
National Institute of Child Health
San Borja, Lima, Peru
Albert Sabin Children’s Hospital in Fortaleza, Brazil
specializes in Exstrophy treatment via Kelley procedure<
Contact: manoellfo@gmail.com
Support Group: Napex Nucleo Apoio
Dr. Amilcar Giron, Urologist
Dr. Rafael Deyl, Pediatric Surgeon
Sueli Castro, President of Napex Nucleo Apoio
Darlene Farina, VP of Napex Nucleo Apoio
ASEXVE Spain (Exstrophy, Epispadias, Hypospadias)
Rosario Lopez, President
Civil Hospital in Ahmedabad
Dr. Rakesh Joshi – Professor and head Department of Pediatric Urology, BJ Medical College, Civil Hospital Asarwa, Ahmedabad, India
Muljbhai Patel Urological Hospital in India
Dr. Mahesh Desai – Consultant and Urologist and Managing Trustee
Great Ormond Street Hospital (GOSH)
Great Ormond Street, London WC1N 3JH
Urologists:
Dr. Peter Cuckow MBBS, FRCS, FRCS (Paed.)
Consultant Paediatric Urologist
Special interests: Bladder exstrophy, laparoscopic surgery, intersex, hypospadias and reconstructive urology
Dr. Imran Mushtaq MBChB, MD, FRCS, FRCS (Paed.)
Consultant Paediatric Urologist
Special interests: Laparoscopic surgery, intersex, hypospadias, bladder exstrophy, robotic surgery and cloacal anomalies
For adult patients:
University College London Hospitals, NHS Foundation Trust
Department of Urology
Head of clinic: Dr Peter CUCKOW
250 Euston Road
LONDON NW1 2BU
UNITED KINGDOM
Phone : 44 (0) 20 7405 9200
Fax : 44 (0)207 813 8260
No one has to navigate bladder exstrophy alone. Through shared experiences, education, and connection, the bladder exstrophy community continues to support individuals and families around the world.