Governance

Governance

ERICA Governance
ERICA Governance

Executive Committee

Alberto Pereira
Alberto Pereira
prof. dr. Alberto Pereira
WP1, WP6 leader, EB and coordinator
(co)Chair of ERN-RWG, Endo-ERN coordinator, EJP RD WP17 task lead, participation in WP12, 14,15, and 20, coordinator of CEF actions linked to Endo-ERN.
Franz Schaefer
Franz Schaefer
prof. dr. Franz Schaefer
WP2 leader, EB
(co)Chair of ERN-RWG, ERKNet coordinator EJP RD Pillar 2 co-lead, WP13 co-lead, WP17 task lead, contributor to WPs 1-5, 11,12,16,20), coordinator ERKReg, European Rare Kidney Disease Registry, IT4ERKNet (CEF action) coordinator, IMI-2 connect4children participant
Eduardo Lopez Granados
Eduardo Lopez Granados
dr. Eduardo López Granado
WP2 leader, EB
(co)Chair of ERN-RWG, and chair of the ERN-RWG registry Task Force, ERN-TransplantChild coordinator, EJP RD participant in WP10, 16 and 20, CEF actions linked to TransplantChild, coordinator of the Paediatric European Transplantation Registry (PETER).
Mar Mañú Pereira
Mar Mañú Pereira
Mar Mañú Pereira PhD, MSc
WP3 leader, EB
Involved at coordination level of ERN-EuroBloodNet by agreement with its coordinator AP-HP, coordinator ENROL, the European Rare Blood Disorders Platform for registries
Ana Rath
Ana Rath
dr. Ana Rath
WP3 leader, EB
Coordinator of the OrphanetWork Direct Grant [831390] and of the RD-CODE project [826607]. Participation in EJP RD (WP1,2,5,10,11,13,14, 16 and P2 coordinator); SOLVE-RD and RARE 2030
Luca Sangiorgi
Luca Sangiorgi
dr. Luca Sangiorgi
WP4 leader, EB
(co)Chair of ERN-RWG, ERN BOND coordinator, coordinator CEF actions linked to ERN BOND, participation in EJP RD (WP 14 and 20). ERN liaison officer at EMA. Participation in the constitution of RD-section of BBMRI and co-lead of the national RD-working group. Coordinator of the Telethon Network of Genetic Biobanks (Network of Italian RD-biobanks.
Ralf-Dieter Hilgers
Ralf-Dieter Hilgers
prof. dr. Ralf-Dieter Hilgers
WP4 leader, EB
Strong connection to ERN RARE-Liver and Endo-ERN. EJP RD co-lead of WP20 and former coordinator of the FP7 funded IDeAl project.
Ruth Ladenstein
Ruth Ladenstein
prof. dr. Ruth Ladenstein
WP5 leader, EB
ERN-PaedCan coordinator, EJP RD participation in WP11, WP14, WP16, WP18, CEF action linked to ERN PaedCan and in the PARTNER (777336) project, developing a dedicated registry for very rare paediatric tumours
Anton Ussi
Anton Ussi
Anton Ussi MSc
WP5 leader, EB
EJP RD participation in WP3, 8, 19 & 20, participation in all WPs in IMI2 project EU-PEARL, developing Master Protocols platform trials including rare diseases; coordinator of ADVANCE, an Erasmus Plus project providing educational activities for advanced therapy development; is a partner in EOSC-LIFE, developing cloud solutions for academic research; Coordinator of EATRIS-PLUS, an infrastructure project developing tools and services for high quality multi-omics research.
Maurizio Scarpa
Maurizio Scarpa
prof. dr. Maurizio Scarpa
WP5 leader, EB
MetabERN coordinator, Chair of the ERNCG Knowledge Generation WG, EJP RD participation in WP 19 and 20, the Rare2030 program on rare disease policy making, the C4C program on Paediatric clinical trial and the U-IMD, the unified registry for metabolic diseases.

Advisory Board

Advisory Board Representing Name EWG
Strategic BoMS ERN Board of Member States Birute Tumiene all
Strategic BoMS Finland Helena Kääriainen all
Strategic BoMS Ireland Eileen Treacy all
Strategic BoMS Poland Katarzyna Kotulska-Jozwiak all
Strategic JRC Joint Research Centre Simona Martin all
Strategic ERC European Research Council Jean-Pierre Bourguignon, to be invited all
Strategic IRDiRC International Rare Disease Research Consortium Lucia Monaco all
Strategic EJP RD European Joint Programme on Rare Diseases Daria Julkowska all
Strategic EJP RD European Joint Programme on Rare Diseases Rima Nabbout all
Strategic EPF European Patient’s Forum to be invited all
Regulatory EMA European Medicines Agency Kristina Larsson (head of Orphan Office) WP4
Regulatory NCA-CHMP National Competent Authorities-Committee for Medicinal Products for Human Use Bruno Sepodes WP4
Innovation EFPIA European Federation of Pharmaceutical Industries and Associations Edith Frénoy WP5
Innovation EUCOPE proposed Delphine Roulland, to be invited WP5
Innovation EuropaBio proposed Bernard Grimm, to be invited WP5
Innovation MedTech proposed Caterina Marcon, to be invited WP5
Innovation COCIR Digital industry Nicole Denjoy (Secretary General) Danny Van Roijen, to be invited WP5