General Assembly: The General Assembly is composed of all beneficiaries of the EJP RD. The General Assembly will be the ultimate decision making body dealing with extraordinary decision requiring vote of all members like inclusion of new ones or exclusion of a nonperforming partner. For other decisions the vote will be centralized and put in hands of Governing Board. Voting procedure: The GA will strive to reach consensus and if consensus cannot be reached, the GA will vote on different options. GA Quorum and voting arrangements will be elaborated on in the Consortium Agreement.

Governing Board: The Governing Board (GB) is the highest decision making body to approve the organization, work programme, the Annual Work Plan of the following year, the structure and information flow and the political outcome of the EJP RD. The Governing Board consists of one representative per participating country, one representative of ERNs, one representative of participating EU infrastructures, one patient organization representative (EURORDIS), one representative of Orphanet and one representative of other non-profit organizations.

Coordination Office: The Coordination Office based at INSERM consists of the coordinator, two senior and two junior project managers, communication officer, financial officer and assistant. The CO is the central point and carry out the day-to-day operational management by supporting EJP RD partners.

Independent Ethics Advisor: With the aim to comply with the European ethical and legal frameworks, an independent expert is appointed as an “Ethics Advisor” in charge of advising on and monitoring ethical/legal/regulatory issues of the EJP RD, of the Data Management Plan, as well as of the projects founded within EJP RD to ensure that the ethics managementof the projects are carried out within the H2020 framework.

Advisory Regulatory Ethics Board: In order to ensure compliance of the project and its activities with ethical and regulatory requirements, a project ‘Advisory Regulatory Ethics Board’ (AREB) has been set up. It consists of internal EJP RD ethics/regulatory/legal experts, including members with recognised expertise from involved European RIs. It ensures compliance with all international and European relevant rules and ethical norms, including but not limited to fundamental and patients’ rights, data management, protection and confidentiality, of the EJP RD as well as of the projects founded within EJP RD. In particular, the AREB is in charge of overseeing ethical issues and regulatory procedures envisaged in the EJP RD four Pillars and by assisting partners.

Executive Committee: The Executive Committee (ExCom) composed of the Coordinator, project officer, Pillar leaders, patients and ERN representatives and all WP leaders) will be the forum to discuss details of the EJP RD progress, annual work plans and related resource utilization.

Operating Group: In order to coordinate the support and swift communication within and across pillars, the pillar leaders together with coordinator and project managers will form the Operating Group (OG). The OG is the driving force for the elaboration of the Annual Work Plans.

Satellite Boards

Policy Board: The members of the EJP RD are aware of the importance of continuous feedback and dialogue with relevant national, European and international stakeholders. This is necessary to translate efficiently the specific needs and strategy represented by countries or European Commission as well as the outcomes of the EJP RD. The Policy Board has a major role in ensuring this dialogue and translation through its participation in EJP RD strategy and sustainability development. The Policy Board is constituted from:

● Representatives of national ministries of research and health;
● Representatives of European Commission Directorates: DG RTD, DG Santé, DG Connect;
● Representative of the pharmaceutical industry and public-private initiatives (e.g. European Federation of Pharmaceutical Industries and Associations, EFPIA; Innovative Medicines Initiative, IMI);
● Representative of EuropaBio;
● Representative of regulatory authorities (e.g. European Medicines Agency, EMA, esp. Committee for Orphan Medicinal Products, COMP, EuNetHTA); and
● Chair and vice-chair of the International Rare Diseases Research Consortium (IRDiRC).
Meetings: Once a year

National mirror groups (NMG): Participating countries are strongly advised to constitute NMG, bringing together the national representatives of the EJP RD and other relevant RD stakeholders. The role of the NMGs is to ensure national coordination, contribute to the objectives of the EJP RD and benefit from it. The creation and composition of a NMG is at the discretion of each participating country. NMGs include representatives of the National plan for RD, national nodes of the European Reference Networks, relevant national authorities and research institutions (whether participating to the EJP RD or not), as well as the relevant national partners of the EJP RD and GB member that report NMG views and positions during GB meetings. Although not mandatory, the establishment of National Mirror Groups ensures that national activities, strategies and needs are taken into account when taking decisions at the EJP RD level and when designing the annual work plans. Please see the NMG Terms of Reference and NMG Country examples for more details.

Board of funders: In order to ensure the independence of joint transnational calls management (Pillar 1), the final decisions on call topics and implementation of calls are taken autonomously by the Board of Funders (BOF). The composition of Board of Funders is variable depending on the configuration of funding bodies participating in the joint transnational calls. BOF is chaired by the Pillar 1 leaders.
Meetings: Ad hoc meetings before and after the launch of each joint transnational call for proposals

Ad hoc Advisory Board (AB): The ad hoc Advisory Board(s) is constituted on demand of BOF or Pillar 2 and 4 leaders in relation to pilot projects foreseen. The AB consists of international experts and RD stakeholders to include their knowledge and experience and use their input for the definition of the research strategy for joint transnational calls or pilot projects.

INSTITUTION ACRONYMINSTITUTIONREPRESENTATIVE
ACU/ACURAREACIBADEM UNIVERSITESIOsman Ugur Sezerman
AFMASS FRANCAISE CONTRE LES MYOPATHIESAlexandre Mejat
AITAIT AUSTRIAN INSTITUTE OF TECHNOLOGY GMBHGuenter Schreier
AKASUOMEN AKATEMIAHeikki Vilen
AMCACADEMISCH MEDISCH CENTRUM BIJ DE UNIVERSITEIT VAN AMSTERDAMRonald Cornet
ANRAGENCE NATIONALE DE LA RECHERCHEDominique Dunon-Bluteau
AOUPAZIENDA OSPEDALIERO UNIVERSITARIA PISANARosaria Talarico
APHP
ASSISTANCE PUBLIQUE - HOPITAUX DE PARIS
Rima Nabbout and
Alain Verloes
BBMRIBIOBANKS AND BIOMOLECULAR RESOURCESRESEARCH INFRASTRUCTURE CONSORTIUM(BBMRI-ERIC)Boelo Hendrik Steinfelder
BLACKSWANBLACKSWAN FOUNDATIONOlivier Menzel
CHARITECHARITE - UNIVERSITAETSMEDIZIN BERLINAndreas Kurtz
CIHRCANADIAN INSTITUTES OF HEALTH RESEARCHChristopher McMaster
CLB
CENTRE ANTICANCEREUX LEON BERARDJean-Yves Blay and
Isabelle Ray-Coquard
CNAG-CRGFUNDACIO CENTRE DE REGULACIO GENOMICAIvo Gut
CSO-MOHMINISTRY OF HEALTHAvi Israeli
CVBFCONSORZIO PER VALUTAZIONI BIOLOGICHE E FARMACOLOGICHEAngelica Intini
DFGDEUTSCHE FORSCHUNGSGEMEINSCHAFTKatja Grossman
DLRDEUTSCHES ZENTRUM FUER LUFT - UND RAUMFAHRT EVRalph Schuster
EATRISEATRIS ERICAnton Ussi
ECRIN/PedCRINECRIN EUROPEAN CLINICAL RESEARCH INFRASTRUCTURE NETWORKMarta Del Alamo
EKUTEBERHARD KARLS UNIVERSITAET TUEBINGENHolm Graessner
EMBLEUROPEAN MOLECULAR BIOLOGY LABORATORYJerry Lanfear
EORTCEUROPEAN ORGANISATION FOR RESEARCH AND TREATMENT OF CANCER AISBLStéphane Lejeune
ERASMUS MCERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAMIrene M.J. Mathijssen
EURORDISEURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATIONVirginie Bros-Facer
FCT
FUNDACAO PARA A CIENCIA E A TECNOLOGIA
Anabela Lopes Isidro
FFRDFONDATION MALADIES RARESRoseline Favresse
FGB FONDAZIONE PER LA RICERCA FARMACOLOGICA GIANNI BENZI ONLUSViviana Giannuzzi
FNRFONDS NATIONAL DE LA RECHERCHESean Sapcariu
FNRSFONDS NATIONAL DE LA RECHERCHE SCIENTIFIQUEArnaud Goolaerts
FRQSFONDS DE RECHERCHE DU QUEBEC - SANTEMaxime Beaudoin
FRRBFONDAZIONE REGIONALE PER LA RICERCA BIOMEDICAPaola Bello
FTELE
FONDAZIONE TELETHON
Chiuhui Mary Wang and
Elena Beltrami
FWFFONDS ZUR FÖRDERUNG DER WISSENSCHAFTLICHEN FORSCHUNGStephanie Resch
FWOFONDS VOOR WETENSCHAPPELIJK ONDERZOEK-VLAANDERENAlain Deleener
GSRTGENIKI GRAMMATIA EREVNAS KAI TECHNOLOGIASSofia Dimitropoulou
GUFJOHANN WOLFGANG GOETHE-UNIVERSITATFRANKFURT AM MAINHolger Storf
HRBTHE HEALTH RESEARCH BOARDEileen Treacy
HUGENHACETTEPE UNIVERSITESIEce Akhan Güzelcan
HUSHOPITAUX UNIVERSITAIRES DE STRASBOURGHélène Dolfus
IMAGINEIMAGINE INSTITUT DES MALADIES GENETIQUES NECKER ENFANTS MALADES FONDATIONStanislas Lyonnet
INFRAFRONTIERINFRAFRONTIER GMBHMichael Raess
INSAINSTITUTO NACIONAL DE SAUDE DR. RICARDO JORGESandra Alves
INSERMINSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALECatherine Nguyen
IORISTITUTO ORTOPEDICO RIZZOLILuca Sangiorgi
IPCZDINSTYTUT POMNIK CENTRUM ZDROWIA DZIECKAKrystyna Chrzanowska
ISCIIIINSTITUTO DE SALUD CARLOS IIIEva Bermejo-Sanchez
ISSISTITUTO SUPERIORE DI SANITADomenica Taruscio
ITINSERM TRANSFERT SACatherine Clusel
IT MoH
MINISTERO DELLA SALUTE
Raffaele Ruoco and
Monica Paganelli
KU LeuvenKATHOLIEKE UNIVERSITEIT LEUVENEric Legius
LBGLUDWIG BOLTZMANN GESELLSCHAFT GMBHChristoph Bock
LMTLIETUVUOS MOKSLO TARYBAZivile Ruzele
LUMC
ACADEMISCH ZIEKENHUIS LEIDEN
Marco Roos and
Alberto M. Pereira
MEYSMINISTRY OF EDUCATION YOUTH AND SPORTSJudita Klosakova
MoSAESOTSIAALMINISTEERIUMAngela Ivask
MUGGDANSKI UNIWERSYTET MEDYCZNYAleksandra Zurowska
MUWWARSZAWSKI UNIWERSYTET MEDYCZNYPiotr Fiedor
NCBRNARODOWE CENTRUM BADAN I ROZWOJUMarcin Chmielewski
NKFIHNEMZETI KUTATASI FEJLESZTESI ES INNOVACIOS HIVATALElod Nemerkényi
RABOUDUMC STICHTING KATHOLIEKE UNIVERSITEITPeter-Bram't Hoen
SAS
SLOVENSKA AKADEMIA VIED
Zuzana Cernakova
SERMASSERVICIO MADRILENO DE SALUDEduardo Lopez Granados
SNSFSCHWEIZERISCHER NATIONALFONDS ZUR FORDERUNG DER WISSENSCHAFTLICHEN FORSCHUNGChristoph Meier
SRCVETENSKAPSRADET - SWEDISH RESEARCH COUNCILSverker Lundin
TEDDY"TEDDY - EUROPEAN NETWORK OF EXCELLENCE FOR PAEDIATRIC CLINICAL
RESEARCH"
Mariangela Lupo
TUBITAKTURKIYE BILIMSEL VE TEKNOLOJIK ARASTIRMA KURUMUA. Mete Karaca
TuscRegREGIONE TOSCANAKatia Belvedere
UKAUNIVERSITAETSKLINIKUM AACHENRalf-Dieter Hilgers
UKL-HDUNIVERSITAETSKLINIKUM HEIDELBERGFranz Schaefer
UKLFRUNIVERSITAETSKLINIKUM FREIBURGHanns Lochmüller
ULEICUNIVERSITY OF LEICESTERAnthony J. Brookes
ULIVTHE UNIVERSITY OF LIVERPOOLMark Turner
UMUNIVERSITEIT MAASTRICHTChris Evelo
UMCGACADEMISCH ZIEKENHUIS GRONINGENMorris A. Swertz
UNEWUNIVERSITY OF NEWCASTLE UPON TYNEVolker Straub
UNIUDUNIVERSITÀ DEGLI STUDI DI UDINEMaurizio Scarpa
UPMUNIVERSIDAD POLITECNICA DE MADRIDMark Wilkinson
VIAAVALSTS IZGLITIBAS ATTISTIBAS AGENTURAJanis Ancans
VINNOVAVERKET FÖR INNOVATIONSSYSTEMFrida Lundmark
VUHSKVIESOJI ISTAIGA VILNIAUS UNIVERSITETO LIGONINE SANTAROS KLINIKOSBirute Tumiene
ZonMwZORGONDERZOEK NEDERLAND ZONRadjesh Manna

EUROPEAN ORGANISATIONS

EUCOPE: Diego Ardigò

EuropaBio: Bernard Grimm

IRDiRC: Lucia Monaco and David Pearce

EURORDIS: Valentina Bottarelli

EMA: Jordi Llinares

IMI: Pierre Meulien

DG Santé: Hélène Le Borgne

DG RTD: Catherine Berens

DG CONNECT: Jose Valverde-Albecete

ARMENIA

Ministry of Education: Naira Ayvazan

AUSTRIA

Ministry of Health and Women’s affairs: Friederike Zechmeister-Machhart

BULGARIA

Ministry of Health: Irina Kovacheva

CANADA

Health Products and Food Branch in Health Canada: Alysha Croker

Ministry of Innovation, Science and Economic Development: Christopher McMaster, Jeanne Egar

CROATIA

Ministry of Health and Social Welfare: Ingeborg Barisic

CZECH REPUBLIC

Ministry of Education, Youth and Sports: Judita Klosakova

Ministry of Health: Pavla Dolezalova

ESTONIA

Ministry of Social Affairs: Heli Paluste

FRANCE

Ministry of Solidarity and Health: Jérôme Weinbach

Ministry of Education, Research, and Innovation: Bertrand Schwartz

GEORGIA

Ministry for Health: Ekaterine Khmaladze

GERMANY

Ministry of Health: Theda Wessel

Ministry of Education and Research: Judith Reichel

GREECE

Ministry of Education, Research and Religious Affairs: Sossana Kolyva

HUNGARY

Ministry of Health: Gyorgy Pfliegler

ISRAEL

Ministry of Health: Avi Israeli

ITALY

Ministry of Health: Gaetano Guglielmi

Ministry of Education, University, and Research: Alessandra Renieri

LATVIA

Ministry of Education and Science: Janis  Ancans

LITHUANIA

Ministry of Education, Science and Sport: Daine Denisoviene

Ministry of Health: Anželika Balčiūnienė

MALTA

Ministry for Health: Miriam Azzopardi

NETHERLANDS

Ministry of Health, Welfare and Sport: Maaike Wijnhoud

NORWAY

Ministry of Health and Care Services: Nora Gamst

POLAND

Ministry of Health: Jakub Adamski

Ministry of Science and Higher Education: Ryszard Rzepecki

PORTUGAL

Ministry of Health: Válter Fonseca

Ministry of Science, Technology and Higher Education: Patrícia Maciel

SLOVAKIA

Ministry of Health: Tatiana Foltánová

Ministry of Education, Science, Research and Sport: Richard Imrich

SPAIN

Ministry of Health, Social Services and Equality: Pilar Aparicio Azcárraga

SWITZERLAND

State Secretariat for Education, Research and Innovation (SERI): Myriam Cevallos

TURKEY

Ministry of Industry and Technology: Jale Sahin

Ministry of Health: Onur Burak Dursun

UNITED KINGDOM

Department of Health: Monika Preuss

PARTNER ACRONYM COUNTRYROLENAME
INSERM France Coordinator Daria Julkowska
INSERMFranceIT GGB directorCatherine Nguyen
INSERMFrancePillar 2 coleaderAna Rath
DLRGermanyPillar 1 coleaderRalph Schuster
VUHSKLithuaniaPillar 3 coleaderBiruté Tumiene
ZON (ZonMw)NetherlandsPillar 1 coleaderSonja van Weely
APHPFrancePillar 4 coleaderRima Nabbout
UKL-HDGermanyPillar 2 coleaderFranz Schaefer
IORItalyChair of ERN Research GroupNicoline Hoogerbrugge
EATRISInfrastructurePillar 4 coleaderAnton Ussi
EURORDISEU organisation (France)Pillar 3 coleaderVirginie Bros-Facer
INSERMFranceWP1Daria Julkowska
ISCIIISpainWP2Eva Bermejo-Sanchez
ISSItalyWP2Domenica Taruscio
INSERMFranceWP3Serge Amselem
EATRISInfrastructureWP3Anton Ussi
FGBItalyWP4Viviana Giannuzzi
FTELEItalyWP4Stefano Benvenuti
INSERMFranceWP5Tanguy Onakoy
DLRGermanyWP6Ralph Schuster
ZON (ZonMw)NetherlandsWP7Sonja van Weely
FFRDFranceWP8Christine Fetro
CSO/MoHIsraelWP9Irit Allon
INSERMFranceWP10Ana Rath
ULEICUnited KingdomWP10Anthony Brookes
INSERMFranceWP11Ana Rath
INSERMFranceWP11Ana Rath
CNAG-CRGSpainWP11Sergi Beltran
ULEICSpainWP12Anthony Brookes
LUMCNetherlandsWP12Marco Roos
UKL-HDGermanyWP13Franz Schaefer
UMNetherlandsWP13Chris Evelo
ISS ItalyWP14Claudio Carta
EURORDISEU organisation (France)WP15Virginie Bros-Facer
FFRDFranceWP16Roseline Favresse
EKUT (ERN-RND)GermanyWP17Holm Graessner
VUHSKLithuaniaWP18Biruté Tumiene
IPCZD (CMHI) PolandWP18Krystyna Chrzanowska
EURORDISEU organisation (France)WP18Virginie Bros-Facer
EATRISInfrastructureWP19Anton Ussi
FTELEItalyWP19Stefano Benvenuti
APHPFranceWP20Rima Nabbout
UKAGermanyWP20Ralf-Dieter Hilgers
HSKGermanyWP20Maurizio Scarpa

Members

Marta del Alamo,  European Clinical Research Infrastructure Network (ECRIN),  France

Viviana Giannuzzi, Fondazione per la ricerca farmacologica Gianni Benzi Onlus (FGB), Italy

Michaela Th. Mayrhofer, Biobanks And Biomolecular Resources research  Infrastructure Consortium (BBMRI- ERIC), Austria

Rob Hooft,  European life-sciences Infrastructure for biological Information (EMBL-EBI –DTL PROJECTSELIXIR/ELIXIR-NL) The Netherland

Giovanni Migliaccio, Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF), Italy

Sonia Gueguen, Institut National De La Sante Et De La Recherche Medicale for Rare Disease Cohorts (RaDiCo-Inserm), France

Irene Schlünder, Biobanks And Biomolecular Resources research  Infrastructure Consortium (BBMRI- ERIC), Austria

Deputy members

Annalisa Landi, Fondazione per la ricerca farmacologica Gianni Benzi Onlus (FGB), Italy

Petr Holub, Biobanks And Biomolecular Resources research  Infrastructure Consortium (BBMRI- ERIC), Austria

Independent ethics advisors

Anne Demoisy 

Joana Namorado