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ERN eUROGEN

Acronym: ERN eUROGEN

General Information

Identification Code: 240482147281-07
Website: [object Object]
Entity Form: Network
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 7/29/2022
Last Update: 2/7/2024
EP Accredited Number: 0

Mission & Interests

Goals: 24 European Reference Networks (ERNs) facilitate discussion on rare diseases and complex conditions requiring highly specialised treatment and concentrated knowledge and resources. ERN eUROGEN is the European Reference Network (ERN) for Rare Urogenital Diseases and Complex Conditions and covers three workstreams dealing with different disease areas: workstream 1 - rare congenital uro-recto-genital anomalies (paediatric); workstream 2 - functional urogenital conditions requiring highly specialised surgery (adults); and workstream 3 - rare urogenital cancers. At present, ERN eUROGEN comprises 56 Healthcare Provider (HCP) Full Members and Affiliated Partners (Associated National Centers and National Coordination Hubs) from 20 Member States.
Interests Represented: Does not represent commercial interests
Interests:
  • Education and training
  • International co-operation and development
  • Public health
  • Research and innovation
  • Trans-European Networks
Levels of Interest:
  • european

Activities

Main EU Legislative Proposals: 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 developements related to the goals as 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 th especific stakeholder networks information related to specific policy documents, surveys and legislation related information is collected and acted upon when seen appropriate.
Communication Activities: ERN eUROGEN, EURORDIS and the specific Network of Stakeholders for Rare Diseases use their comminication channels suchs as websites, social media platforms and presentations and publications of their members and related partners for the improvements for 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 has been released and new initiative for Global Networks of Networks have been undertaken such as during the European Congress for Rare Diseases 2022 (ECRD2022) and ERICA Board meeting in Madrid (2023).
Inter-institutional or Unofficial Groupings: Unofficial groupings

Head Office

Address: Radboud University Medical Center (Radboudumc)PO Box 9101
Post Code: 6500 HB
City: Nijmegen
Country: NETHERLANDS
Phone: [object Object]

EU Office

Address: Radboud University Medical Center (Radboudumc)PO Box 9101
Post Code: 6500 HB
City: Nijmegen
Country: NETHERLANDS
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: ERN eUROGEN received a direct grant from the Third Health Programme for the coordination, management and activities of the network following a call for proposals by the European Commission. The direct grant ran from 2018-2021 for 36 months with an approximate EC requested contribution of €600,000. The call had a 60 / 40% co-funding ratio. The coordinating healthcare providers of ERN eUROGEN contributed 40% resources with an estimated total project cost of €1,000,348.35. EU Portal information HP-PJ Acronym ERN eUROGEN; Archive Number 831386 Duration 36 month Starte Date 1 Jun 2018. From 1 March 2022 an EU4Health Program Bridging Grant is in plase. Currently a new Grant is under development after positive evaluation.

Membership Information

Members10 Percent: 6
Members25 Percent: 0
Members50 Percent: 0
Members75 Percent: 0
Members: 6
Members F T E: 0.6000000238418579
Info Members: Radboudumc is a University Medical Center with about 12,000 employees and is the ERN eUROGEN HCP Network Coordinator for the European Reference Network (ERN) eUROGEN. The coordination team currently involves 8 people.

Structure

Structure Type: Structure
Is Member Of: ERN eUORGEN's current 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.
Organisation Members: 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)