ERN eUROGEN

EU Legislative Interests

ERN eUROGEN and its representatives direct their wishes to influence policy or legislation through the Network of Stakeholders in the Field of Rare Diseases. All specific developments related to the goals set out for European Reference Networks for Rare Diseases and Complex Conditions are taken into account for the improvements and innovations of care for patients with a rare disease or complex condition. Through the EU newsletters, EURORDIS connections and developments by the specific stakeholder networks, information related to specific policy documents, surveys and legislation-related information is collected and acted upon when seen as appropriate.

Communication Activities

ERN eUROGEN, EURORDIS and the specific Network of Stakeholders for Rare Diseases use their communication channels such as websites, social media platforms and presentations and publications of their members and related partners for the improvements in the care of patients with a rare disease or complex condition and their families in relation to all new EU policy or legal developments. Recently also, new WHO statements on Rare Diseases have been released, and new initiatives for Global Networks of Networks have been undertaken, such as during the European Congress for Rare Diseases 2024 (ECRD2024).

Interests Represented

Does not represent commercial interests

Member Of

ERN eUROGEN is one of the 24 European Reference Networks of the European Commission. Collaboration Agreements have been signed with the following Supporting Partners: • The European Association of Urology (EAU) – which started ERN eUROGEN • The Ano-Rectal Malformations Consortium (ARM Net) • The European Society for Pediatric Urology (ESPU) • The European Paediatric Surgeons Association (EUPSA) • International Society for the Study of Bladder Pain Syndrome (ESSIC) • The International Continence Society (ICS) • EURORDIS

Organisation Members

ERN eUROGEN's current Full Members and Affiliated Partners are represented on the website www.eurogen.ern.eu ERN eUROGEN Coordination Team aligns communications and dissemination activities. The C&D tools which are being used (or will be used) are: • Websites – EC website, Network website, and ERN Collaborative Platform (ECP) • Newsletters – EC e-newsletter, and Network e-newsletter. • Social media – Facebook, Instagram, LinkedIn, Twitter, and YouTube. • A smartphone app (under development) • Promotional materials, e.g., a flyer, posters, banners, logos, videos and a dissemination package for members. • Media and scientific publications, scientific abstracts/presentations for academic meetings, press releases, advertisements, interviews, TV/radio coverage, and patient stories. • Events – ERN eUROGEN Strategic Board Meeting, ERN eUROGEN Webinars, European Association of Urology Annual Congress and other scientific congresses, Rare Disease Day, Urology Week, policy events and European Commission events.