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
WP6, 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

Birute Tumiene
Birute Tumiene
assoc. prof. Birute Tumiene MD, PhD
ALL, Advisory Board: Strategic
Representing: BoMS, ERN Board of Member States
Helena Käärianen
Helena Käärianen
prof. Helena Käärianen MD, PhD
ALL, Advisory Board: Strategic
Representing: BoMS, Finland
Eileen Treacy
Eileen Treacy
prof. Eileen Treacy MD
ALL, Advisory Board: Strategic
Representing: BoMS, Ireland
Katarzyna Kotulska-Jozwiak
Katarzyna Kotulska-Jozwiak
prof. Katarzyna Kotulska-Jozwiak MD
ALL, Advisory Board: Strategic
Representing: BoMS, Poland
Simona Martin
Simona Martin
Simona Martin MD, PhD
ALL, Advisory Board: Strategic
Representing: JRC, Joint Research Centre
Lucia Monaco
Lucia Monaco
dr. Lucia Monaco
ALL, Advisory Board: Strategic
Representing: IRDiRC, International Rare Disease Research Consortium
Daria Julkowska
Daria Julkowska
Daria Julkowska PhD
ALL, Advisory Board: Strategic
Representing: EJP RD, European Joint Programme on Rare Diseases
Rima Nabbout
Rima Nabbout
Rima Nabbout MD, PhD
ALL, Advisory Board: Strategic
Representing: EJP RD, European Joint Programme on Rare Diseases
Dimitrios Athanasiou
Dimitrios Athanasiou
Dimitrios Athanasiou BA, MBA
ALL, Advisory Board: Strategic
Representing: EPF, European Patient's Forum
Kristina Larsson
Kristina Larsson
Kristina Larsson MSc
WP4, Advisory Board: Regulatory
Representing: EMA, European Medicines Agency
Bruno Sepodes
Bruno Sepodes
Bruno Sepodes PharmD, MSc, PhD, MPH
WP4, Advisory Board: Regulatory
Representing: NCA-CHMP, National Competent Authorities-Committee for Medicinal Products for Human Use
Tina Taube
Tina Taube
Tina Taube MSc
WP5, Advisory Board: Innovation
Representing: EFPIA, European Federation of Pharmaceutical Industries and Associations
Vittoria Carraro
Vittoria Carraro
Vittoria Carraro MSc
WP5, Advisory Board: Innovation
Representing: EUCOPE, the European Confederation of Pharmaceutical Entrepreneurs
Bernard Grimm
Bernard Grimm
Bernard Grimm MSc
WP5, Advisory Board: Innovation
Representing: EuropaBio, The European Association for Bioindustries
Jesús Rueda Rodríguez
Jesús Rueda Rodríguez
Jesús Rueda Rodríguez MSc
WP5, Advisory Board: Innovation
Representing: MedTech Europe, the European trade association for the medical technology industry including diagnostics, medical devices and digital health.
Annika Eberstein
Annika Eberstein
Annika Eberstein MSc
WP5, Advisory Board: Innovation
Representing: COCIR, he European Trade Association representing the medical imaging, radiotherapy, health ICT and electromedical industries.