Dissemination

By clicking the links you can read our latest news and past newsletters, see a list of upcoming events relevant to the ERN, see scientific publications generated by the ERN and its members, see where we have been mentioned in external media, and find our social media accounts.

You can download our dissemination plan and our dissemination report.

We have several collaborative partners, and you can read more about our activities with them here.

Research falls under collaboration, and the results of any research are also disseminated.

ERN eUROGEN has a research strategy that aims to harness the collective research potential of all ERN eUROGEN’s healthcare providers and patients. Knowledge sharing will foster innovation and allow new treatments or surgical techniques to be tested and made available to patients where there are gaps in current effective diagnoses or treatments.

At present, the main focus of ERN eUROGEN’s research activity is its patient registry, but the network is also involved in the European Rare Disease Research Coordination and Support Action consortium (ERICA) and the European Joint Programme on Rare Diseases (EJP RD).

European Rare Disease Research Coordination and Support Action consortium (ERICA)

The aim of ERICA, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.

Through knowledge sharing, engagement with stakeholders in the rare disease domain and assembly of transdisciplinary research groups working across the global health spectrum, ERICA strives to reach the following goals:

• new intra- and inter-ERN rare disease competitive networks
• effective data collection strategies
• better patient involvement
• enhanced quality and impact of clinical trials
• increased awareness of ERNs innovation potential.

ERICA will strengthen research and innovation capacity by integration of ERN research activities, outreach to European research infrastructures to synergistically increase impact, and innovation. This will result in efficient access and safe therapies for the benefit of patients suffering from rare diseases and complex conditions.

ERN eUROGEN regularly participates in ERICA activities, such as its General Assembly and working group meetings relating to its Work Packages.

European Joint Programme on Rare Diseases: EJP RD

The EJP RD is a programme aiming to create an effective rare diseases research ecosystem for progress, innovation and for the benefit of everyone with a rare disease. They support rare disease stakeholders by funding research, bringing together data resources & tools, providing dedicated training courses, and translating high-quality research into effective treatments.

EJP RD brings together over 130 institutions (including all 24 ERNs) from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.

EJP RD provides funding opportunities, a guide for patients in research, a research translation support office, a clinical studies support office, ethics and regulatory advice, a resource map showing coordinated access to data and services, and a free MOOC (Massive Open Online Course), “Introduction to Translational Research for Rare Diseases”.

ERN eUROGEN has been involved in several successful applications for EJP RD funding, including:

• Two ERN Research Training Workshops on innovative diagnostics and interdisciplinary treatment for spina bifida and other dysraphisms, one which took place in March 2022 and another which is planned for June 2023.
• A Research Mobility Fellowship on Urogenital Tumours, which took place in 2022.
• An ERN Research Training Workshop on Psychology in Rare Diseases (RARE TOGETHER), 8-9 May 2023.

The ERN Collaborative Platform, known as the ECP, is a secure web-based platform that supports the ERN Board of Member States, the ERN Coordinators and ERNs members in their online communication, document management and event organization. It is not for the exchange of patient data (personal or clinical).

Authorised Users

Registered users can log into the ECP here.

Requesting Access to the ECP

Access to the ECP is strictly regulated to protect data privacy. Only authenticated users (EU Login) can request authorisation (SAAS) from the ERN to use the ECP.

For those who are working in one of our member centres and have not registered, here is a guide to creating your EU Login, and applying for access to the ECP.