Executive Committee
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 Schäfer
prof. dr. Franz Schäfer
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 López Granados
dr. Eduardo López Granados
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 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
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
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
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
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 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
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.