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Our Network

Joining 56 healthcare providers across the EU/EEA specialised in rare urogenital diseases and complex conditions.

For Patients

Working to improve the lives of the 30 million people and their families living with 6,000 – 8,000 rare diseases.

For Clinicians

Providing virtual expert MDT consultations to diagnose, suggest treatment, and provide post-operative support.

Our Services

Coordination, dissemination, evaluation, MDTs, a patient registry, training & education, and guidelines.

Three Workstreams

1

Rare Congenital
Uro-Recto-Genital Anomalies

2

Functional Urogenital Conditions Requiring Highly Specialised Surgery

3

Rare Urogenital Tumours