For patients

Patient Information

We often hear tragic stories of patients with rare or complex, life-threatening diseases, who face challenges in obtaining a correct diagnosis and in accessing appropriate therapies and clinical expertise. Their doctors are unable to help them as they have never seen similar cases, so they are left untreated or have to search the internet in the hope of finding a centre with the necessary expertise.

With ERNs, patients with rare and complex conditions will be able to benefit from the best treatment and advice available in the EU for their specific condition. Their doctors will have access to a highly-specialised pool of colleagues from all over Europe.

Rare & complex urological disease

For patients with a rare or complex urogenital disease or condition, eUROGEN is the European Reference Network.

Examples of rare or complex urogenital conditions are penile cancer, pelvic urethral disruption, hypospadiac surgery. These rare congenital urogenital conditions often require to follow a patient throughout their life span. Many of our patients have reported lack of adequate care when transitioning from paediatric to adult urogenital care. eUROGEN ensures that as many of our patients as possible can receive high quality specialist care from birth through to the end of life.

When is a condition rare?
Between 5,000 and 8,000 rare diseases affect the daily lives of around 30 million people in the EU. For example, in the field of oncology alone, there are almost 300 different types of rare cancers and each year more than half a million people in Europe are diagnosed with one of them.

A rare disease as defined by the EU, is a disease affecting less than 1 in 2000 people. However, some of the highly complex urological conditions needing specialised surgery in workstream 2 (eg urethral diverticula) have an incidence of 1 per 250,000. Therefore, countries with larger populations generally have more experience of treating these conditions.

The complex and rare condition that are part of eUROGEN are divided into 3 different workstreams (WS):

Resources for patients

Share4Rare aims to serve and help the rare diseases patients and caregivers: by using artificial intelligence algorithms they are able to foster global connections between their platform’s users according to their specific conditions.

The community is open to any adult patients, caregivers of paediatric patients with any rare disease, as well as patient representatives and patient organizations.