Updated on 23 April 2024

Executive Committee:

Voting Members:

Egil Bakkeheim, Norway
Director ECFSPR

Laura Kirwan, Ireland

Uroš Krivec, Slovenia

Lutz Naehrlich, Germany
Pharmacovigilance Study Manager


Valérie Storms, Belgium
Patient Representative


Domenique Zomer, The Netherlands


Non-Voting Members:

Christine Dubois, ECFS Executive Director
Lieven Dupont, 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
EstoniaMaire VasarSingle centre representativeMaire.Vasar@kliinikum.ee
FinlandVarpu EleniusSingle centre representativevarpu.elenius@tyks.fi
France Antoine BessouNational registry representativeabessou@vaincrelamuco.org
GeorgiaDodo AgladzeSingle centre representativedoduna_agladze@yahoo.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
MoldovaCristina TomacinschiiSingle centre representativecristinatomacinschii@gmail.com
MontenegroTomo PlamenacSingle centre representativetplamenac@gmail.com
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
RomaniaLiviu PopSingle 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:

Kerry Laidlaw, CF Europe Representative

Non-Voting Members:

Bruce Marshall, CFF Representative
Lieven Dupont, CTN representative
Jacqui van Rens, ECFSPR Executive Coordinator
Arianna Adamoli, Simone Gambazza, Annalisa Orenti and Anna Zolin, Statistical Experts
Alice Fox, Marko Krasnyk and Silvia Lorca Trusted Third Party

Scientific Committee:

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

Data Controller:

Ted André