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URGENT UPDATE (15 March 2022): Support for Ukrainian rare disease patients and families

Our Network

Joining 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

Connecting multidisciplinary teams to diagnose, suggest treatment, and provide post-operative support.

Our Services

Coordination, information, collaboration, evaluation, a patient registry, training & education, guidelines.

Three Workstreams

1

Rare Congenital
Uro-Recto-Genital Anomalies

2

Functional Urogenital Conditions Requiring Highly Specialised Surgery

3

Rare Urogenital Tumours