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
Country | Official Representative | Title | |
---|---|---|---|
Albania | Irena Kasmi | Single centre representative | irenakasmi@hotmail.com |
Armenia | Satenik Harutyunyan | Single centre representative | mycfmail1973@gmail.com |
Austria | Andreas Pfleger | National coordinator | andreas.pfleger@medunigraz.at |
Belarus | Svetlana Keegan | Single centre representative | sveta-lsv@mail.ru |
Belgium | Géraldine Daneau | National registry representative | geraldine.daneau@sciensano.be |
Bulgaria | Guergana Petrova | Single centre representative | Gal_ps@yahoo.co.uk |
Croatia | Duška Tješić-Drinković | Single centre representative | duska.tjesic-drinkovic@zg.htnet.hr |
Cyprus | Panayiotis Yiallouros | Single centre representative | yiallouros.panayiotis@ucy.ac.cy |
Czech Republic | Pavel Drevinek | National registry representative | pavel.drevinek@Lfmotol.cuni.cz |
Denmark | Hanne Vebert Olesen | National registry representative | hannoles@rm.dk |
Finland | Varpu Elenius | Single centre representative | varpu.elenius@tyks.fi |
France | Nathalie Senecal | National registry representative | nsenecal@vaincrelamuco.org |
Georgia | Ia Khurtsilava | Single centre representative | ia.khurtsilava@gmail.com |
Germany | Lutz Naehrlich | National registry representative | Lutz.Naehrlich@paediat.med.uni-giessen.de |
Greece | Elpis Hatziagorou | National registry representative | elpcon@otenet.gr |
Hungary | Andrea Párniczky | National registry representative | andrea.parniczky@gmail.com |
Iceland | Helga Elídóttir | Single centre representative | helgael@landspitali.is |
Ireland | Godfrey Fletcher | National registry representative | gfletcher@cfri.ie |
Israel | Meir Mei-Zahav | National registry representative | meir_zahav@clalit.org.il |
Italy | Rita Padoan | National registry representative | ritaf54@gmail.com |
Latvia | Elina Aleksejeva | Single centre representative | elina.aleksejeva@bkus.lv |
Lithuania | Kęstutis Malakauskas | Single centre representative | Kestutis.Malakauskas@lsmuni.lt |
Luxemburg | Anna-Maria Charatsi | Single centre representative | Charatsi.Anna-Maria@chl.lu |
Macedonia | Stojka Fustik Tatjana Jakjovska | Single centre representative | stojkaf@yahoo.com tatjana.jakjovska@medf.ukim.edu.mk |
Moldova | Oxana Turcu | Single centre representative | oxana.turcu@usmf.md |
Netherlands | Domenique Zomer | National registry representative | d.zomer@ncfs.nl |
Norway | Anita Senstad Wathne | National registry representative | asenstad@gmail.com |
Poland | Lukasz Wozniacki | Single centre representative | lukasz.wozniacki@szpitaldziekanow.pl |
Portugal | Luisa Pereira | National registry representative | mluisafpereira@gmail.com |
Romania | Livio Pop Laurentiu | Single centre representative | liviupop63@yahoo.com |
Russia | Elena Kondratyeva | National registry representative | elenafpk@mail.ru |
Serbia | Milan Rodic | Single centre representative | milan.rodic73@gmail.com |
Slovakia | Hana Kayserova | National registry representative | kayserov.hana@gmail.com |
Slovenia | Uroš Krivec | Single centre representative | uros.krivec@kclj.si |
Spain | Lola Pastor Vivero | National coordinator | mariadolores.pastorvivero@osakidetza.eus |
Sweden | Christina Krantz | National registry representative | christina.krantz@akademiska.se |
Switzerland | Andreas Jung | National coordinator | Andreas.Jung@kispi.uzh.ch |
Turkey | Deniz Dogru Ersöz | National registry representative | ddogru@hacettepe.edu.tr |
Ukraine | Halyna Makukh | Single centre representative | makukh_halyna@ukr.net |
United Kingdom | Sarah Clarke | National registry representative | Sarah.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