Workstreams & Expertise

For Patients

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 European Reference Networks (ERNs), patients with rare and complex conditions are able to benefit from the best treatment and advice available in the European Union (EU) for their specific condition. Their doctors have access to a highly-specialised pool of colleagues from all over Europe.

Rare Uro-Recto-Genital Diseases & Complex Conditions

For patients with a rare uro-recto-genital disease or complex condition, ERN eUROGEN is the European Reference Network.

These rare diseases and conditions often require a patient to be followed up throughout their life span. Many of our patients have reported a lack of adequate care when transitioning from paediatric to adult care. ERN 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 European Commission (EC), is a disease affecting fewer than 1 in 2000 people. However, some of the highly complex conditions needing specialised surgery in our workstream 2 (e.g., urethral diverticula) have an incidence of 1 per 250,000. Therefore, countries with larger populations generally have more experience in treating these conditions.

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

Resources for Patients

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 974 rare disease patient organisations in 74 countries. They are the voice of 30 million people affected by rare diseases throughout Europe.

By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.

EURORDIS supports the creation and development of rare disease national alliances and disease-specific European federations and networks.

Share4Rare aims to serve and help rare disease 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 and/or caregivers of paediatric patients with any rare disease, as well as patient representatives and patient organizations.