1. European
Reference Networks
Annika Nowak
European Commission

2. The ERN
Networks of healthcare providers aiming at improving quality, and safety and access to highly specialised healthcare
Patients affected by rare or low prevalence and complex diseases
Added value at EU level
Need of cooperation:
Scarcity knowledge
Need education
Complexity / high cost
Effectiveness in the use of resources
Multidisciplinary approach
(different specialities/areas of knowledge)

3. 24 Outcome call 2016 26 COUNTRIES Full Member Networks
Affiliated partner
Networks
26 COUNTRIES

4. 24 EpiCARE Rare and Complex Epilepsies BOND ERN Bone Diseases CRANIO
Craniofacial anomalies and ENT disorders
Endo-ERN
Endocrine Conditions
EpiCARE
Rare and Complex Epilepsies
ERKNet
Kidney Diseases
ERN GENTURIS
Genetic Tumour Risk Syndromes
ERN-EYE
Eye Diseases
ERNICA
inherited and congenital anomalies
ERN-LUNG
Respiratory Diseases
ERN-RND
Neurological Diseases
ERN-Skin
Skin Disorders
EURACAN
Solid Adult Cancers
EuroBloodNet
Onco-Hematological Diseases
EUROGEN
Urogenital Diseases
EURO-NMD
Neuromuscular Diseases
GUARD-HEART
Diseases of the Heart
ITHACA
Congenital Malformations and Intellectual Disability
MetabERN
Hereditary metabolic diseases
RARE-LIVER
Hepatological Diseases
ReCONNET
Connective Tissue and Musculoskeletal Diseases
RITA
Immunodeficiency, AutoInflammatory and Auto Immune Diseases
TRANSPLANT-CHILD
Transplantation in Children
VASCERN
Multisystemic Vascular Diseases

5. Remote guidance and diagnosis
Clinical virtual care
Remote monitoring &
follow-up
Remote guidance and diagnosis

6. Research, innovation & knowledge generation Key Elements of ERNs
A framework for structured cooperation to maximise cross-country expertise through joint research projects and clinical trials
ERN provide an opportunity to build top level translational and basic research around shared strategies
Dissemination of research results, education & training activities

7. Registries, research and ERNs
PATIENT CARE
Patient clinical unmeet needs
(treatment/diagnosis)
Patient Data
Population Cohorts/Concentration of cases
Secured Databases
Clinical/Imaging/ Biological Data
Genetics, Molecular Pathology
IT Solutions / Communication between HCP
RESEARCH
Research question/gap
Prospective research
Translational/trials
common elements , principles and requisites 7

8. Funding/support Health programme – CHAFEA – ERN grants
CEF – CNECT - It tools
Horizon 2020 – DG RTD
Structural funds – DG REGIO - translational research
Erasmus + - DG EAC

9. Next steps and actions: ERNs and Research
Building up research capabilities among ERNs
Participation of the ERNs in the call European Joint Programming (EJP) on rare diseases (part of Horizon 2020) and future FP9
Plans to interact with the European Strategy Forum on Research Infrastructures (ESFRI)
Interaction with IMI initiatives, European Medicines Agency and clinical trials related initiatives.

10. Further information: