International Bladder Exstrophy Resources

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.

  • Uro Care Hospital, Kampala
  • Dr. Stephen Wayta, Uganda
  • Dr. Ranjiv Mathews, USA
  • Urologists/fellows from College of Surgeons of East, Central and Southern Africa (COSECSA)
  • Children’s Surgical Hospital of Entebee
 
 

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

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 — Asociación Española de Extrofia Vesical, Cloacal, Epispadias y Patologías Afines
    Rosario López — President
    Phone: 346 563 666 22
    Email: rlopez@asexve.es
    Website: www.asexve.es
  • Montserrat Fernandez — Representative in Catalonia
    Phone: 346 290 605 00
    Email: cataluña@asexve.es
    Website: www.asexve.es

Mitrofanoff Support

Kyla Rogers, Founder/Executive Director

info@mitrofanoffsupport.org.uk

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

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.

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