Updated on 16 June 2023

Executive Committee:

Voting Members:

Egil Bakkeheim, Norway
Director ECFSPR

Géraldine Daneau
Belgium

Uroš Krivec
Slovenia


Domenique Zomer 
The Netherland


Valérie Storms, Belgium
Patient Representative


Lutz Naehrlich, Germany
Pharmacovigilance Study Manager


Non-Voting Members:

Christine Dubois, ECFS Executive Director
Damian Downey, ECFS-CTN representative
Jacqui van Rens, ECFSPR Executive Coordinator


Steering Group

Steering Group Country Representatives


CountryOfficial RepresentativeTitleEmail
AlbaniaIrena KasmiSingle centre representativeirenakasmi@hotmail.com
ArmeniaSatenik HarutyunyanSingle centre representativemycfmail1973@gmail.com
AustriaAndreas PflegerNational coordinatorandreas.pfleger@medunigraz.at
BelarusSvetlana KeeganSingle centre representativesveta-lsv@mail.ru
Belgium Géraldine DaneauNational registry representativegeraldine.daneau@sciensano.be
Bulgaria Guergana PetrovaSingle centre representativeGal_ps@yahoo.co.uk
CroatiaDuška Tješić-DrinkovićSingle centre representativeduska.tjesic-drinkovic@zg.htnet.hr
CyprusPanayiotis YiallourosSingle centre representativeyiallouros.panayiotis@ucy.ac.cy
Czech RepublicPavel DrevinekNational registry representativepavel.drevinek@Lfmotol.cuni.cz
Denmark Hanne Vebert OlesenNational registry representativehannoles@rm.dk
FinlandVarpu EleniusSingle centre representativevarpu.elenius@tyks.fi
France Nathalie SenecalNational registry representativensenecal@vaincrelamuco.org
GeorgiaIa KhurtsilavaSingle centre representativeia.khurtsilava@gmail.com
Germany Lutz NaehrlichNational registry representativeLutz.Naehrlich@paediat.med.uni-giessen.de
Greece Elpis HatziagorouNational registry representativeelpcon@otenet.gr
Hungary Andrea PárniczkyNational registry representativeandrea.parniczky@gmail.com
IcelandHelga ElídóttirSingle centre representativehelgael@landspitali.is
Ireland Godfrey FletcherNational registry representativegfletcher@cfri.ie
Israel Meir Mei-ZahavNational registry representativemeir_zahav@clalit.org.il
Italy Rita PadoanNational registry representativeritaf54@gmail.com
Latvia Elina AleksejevaSingle centre representativeelina.aleksejeva@bkus.lv
Lithuania Kęstutis MalakauskasSingle centre representativeKestutis.Malakauskas@lsmuni.lt
Luxemburg    Anna-Maria CharatsiSingle centre representativeCharatsi.Anna-Maria@chl.lu
MacedoniaStojka Fustik 
Tatjana Jakjovska		Single centre representativestojkaf@yahoo.com 
tatjana.jakjovska@medf.ukim.edu.mk
MoldovaOxana TurcuSingle centre representativeoxana.turcu@usmf.md
Netherlands Domenique ZomerNational registry representatived.zomer@ncfs.nl
NorwayAnita Senstad WathneNational registry representativeasenstad@gmail.com
PolandLukasz WozniackiSingle centre representativelukasz.wozniacki@szpitaldziekanow.pl
Portugal Luisa PereiraNational registry representativemluisafpereira@gmail.com
RomaniaLivio Pop LaurentiuSingle centre representativeliviupop63@yahoo.com
Russia Elena KondratyevaNational registry representativeelenafpk@mail.ru 
SerbiaMilan RodicSingle centre representativemilan.rodic73@gmail.com
SlovakiaHana KayserovaNational registry representativekayserov.hana@gmail.com
Slovenia Uroš KrivecSingle centre representativeuros.krivec@kclj.si
Spain Lola Pastor ViveroNational coordinatormariadolores.pastorvivero@osakidetza.eus
Sweden Christina KrantzNational registry representativechristina.krantz@akademiska.se
Switzerland Andreas JungNational coordinatorAndreas.Jung@kispi.uzh.ch
TurkeyDeniz Dogru ErsözNational registry representativeddogru@hacettepe.edu.tr
UkraineHalyna MakukhSingle centre representativemakukh_halyna@ukr.net
United KingdomSarah ClarkeNational registry representativeSarah.Clarke@cysticfibrosis.org.uk


Additional Voting Member:

Valérie Storms, CF Europe Representative

Non-Voting Members:

Bruce Marshall, CFF Representative
Damian Downey, CTN representative
Jacqui van Rens, ECFSPR Executive Coordinator
Annalisa Orenti and Anna Zolin, Statistical Experts
Alice Fox and Marko Krasnyk, Trusted Third Party
Silvia Lorca, Service Desk Member 
Arianna Adamoli, Statistician

Scientific Committee:

Pierre-Régis Burgel
Siobhán Carr
Anders Lindblad
Milan Macek
Elise Lammertyn, CF Europe Representative
Annalisa Orenti, Statistical Expert
Anna Zolin, Statistical Expert

Data Controller:

Ted André

Pharmacovigilance Study Manager:

Lutz Naehrlich