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 WS 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 diagnosis or treatments. Together with patients eUROGEN will develop new research programmes to stimulate new studies.

ERN eUROGEN is currently:

• Developing a research strategy – aiming to harness the collective research potential of the healthcare providers and patient organisations involved in ERN eUROGEN.
• An active member of the ERN Research Working Group (a Working Group including representatives from all 24 ERNs).
• Participating in joint research activities (research involving at least two or more healthcare providers from two different Member States in the network).

European Joint Programme on Rare Diseases: EJP RD

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.