Research & Innovation

• What we do
• Virtual consultations
• Clinical guidelines
• Research & innovation
• Education & training
• The eUROGEN patient registry
• Cross-ERN actions
• ERNs in general

Research & Innovation

Knowledge sharing across the workstreams 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. Together with patients, ERN eUROGEN will develop new research programmes and stimulate new studies.

ERN eUROGEN is currently:

• Developing a research strategy that aims to harness the collective research potential of all ERN eUROGEN’s members and European Patient Advocacy Group (ePAG).
• An active member of the European Rare Disease Research Coordination and Support Action consortium (ERICA), in which all 24 European Reference Networks (ERNs) take part.
• Participating in joint research activities (research involving at least two or more healthcare providers from two different Member States within the network).

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. We support rare diseases stakeholders by funding research, bringing together data resources & tools, providing dedicated training courses, and translating high-quality research into effective treatments.

It 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 provide funding opportunities, a guide for patients in research, a research translation support office, a clinical studies support office, and ethics and regulatory advice.  They also have a resource map showing coordinated access to data and services.