Chair Committee

The Chair Committee steers the project. It discusses and votes on standards developed in the Topic Expert Groups. It comprises 35 voting members.

Voting members of the Chair Committee are:

  • The Chairs and Vice Chairs of the 11 Topic Expert Groups (25 people, 25 votes)
  • The members of EFCNI’s Parents’ Advisory Board (8 people, 8 votes)
  • The members of EFCNI’s Executive Board (3 people, 2 votes)


In addition to the voting members, non-voting observers can participate in the Chair Committee meeting. This includes observers from the project’s Premium Industry Partners and observers from third party organisations.

The Chair Committee meets annually.

Chairs and Vice Chairs of the Topic Expert Groups

Gérard Bréart

Gérard Bréart is a perinatal epidemiologist and Professor of Public Health at the Université Pierre et Marie Curie in Paris, France. He also holds adjunct faculty positions at the Department of Maternal and Child Health, School of Public Health, University of North Carolina, USA and the Department of Epidemiology, School of Public Health and Tropical Medicine, Tulane University, USA. In addition, Gérard Bréart is a corresponding member of French Academy of Medicine’s Commission on Reproduction and Development.

From 2008 to 2011, Professor Bréart served as Director of the Institute of Public Health at INSERM. Previously, he was the director of INSERM’s epidemiological research unit on perinatal and women’s health (Unité 149) from 1987 to 2007.

His researched focuses on different aspects of women’s and children’s health and he published numerous articles in leading journals, in particular on preterm birth, fetal growth, organisation of care and efficacy and effectiveness of intervention.

He has also been involved in large national and international studies such as the ENP, the EURO-PERISTAT, EPICARD, and EPIPAGE.

Professor Bréart is also past President of the Association of French-speaking Epidemiologists (1989-1993) and of the French Society of Perinatal Medicine (1999-2001).

Morten Breindahl

Morten Breindahl is the President of ESN (the European Society for Neonatology). ESN is the official European society for neonatologists, working to promote research in neonatology, educational opportunities for trainees in neonatology, and trained neonatologists undergoing CPD (Continuous Professional Development). ESN also aims at harmonising subspecialty training in neonatology in Europe by developing and updating a common syllabus and framework for neonatal medicine, and by elaborating assessment methods and accreditation databases of neonatal intensive care units (NICU) in Europe.

Morten Breindahl holds a PhD in paediatric inflectional diseases and is Head of the Patient Flow “very preterm infants”. Furthermore he is Senior Consultant and Medical Director of NeoPETS (the Neonatal and Paediatric Emergency Transport Service), an organisation at the Karolinska University Hospital in Danderyd, Solna and Huddinge, Stockholm, Sweden. In this capacity he has joined a promising and comprehensive reformation of the health care system at Karolinska focusing on value based care and treatment including new organizational structures, leadership and cooperation principles.

He has recently established INFANTS (INternational Federation of Acute Neonatal Transport Services), an organisation with the mission to establish a world-wide cooperation for all neonatal transport teams in order to improve quality of care and treatment to severely ill infants in need for interfacility ground or air transfer. He is the Congress President of the 2nd (2016) and 3rd edition of the international congress  ”Transport of High Risk Neonates – When skill, equipment and professionalism make the difference” which will take place in Oxford, United Kingdom, from 31 August to 2 September 2017.

On a personal level, Morten Breindahl is extremely dedicated to improving quality of care and treatment in neonatology, capable and willing to think out-of-the-box, and has innovated several standard-operating-procedures, processes and products within neonatology.

Giuseppe Buonocore

Professor Giuseppe Buonocore is an Italian pediatrician, who is internationally recognized for his research on neonatal diseases, oxidative stress, and early identification of the newborn at high risk of brain damage.  He is Professor of Pediatrics , Director of the Unit of Pediatric Neonatology  of the University Hospital of Siena, Italy,  and Chairman of Pediatrics at the School of Specialization in Pediatrics & Neonatology, Dept. of Molecular and Developmental Medicine, University of Siena. He is also the past president of ESPR, and UENPS, and currently President of the Tuscan Section of the Italian Society of Neonatology. He is involved in the coordination of numerous pan-European clinical trials as well as Australian and US. Additional research interest fields are ethics in perinatology and fetal and neonatal pain prevention. His research team is funded by several agencies including the Italian Ministry of University and Scientific Research -cofinance scheme for research projects of high national interest as well as European Community: NEOBRAIN project. Professor Buonocore is author of 876 publications, 3 books and 23 book chapters; 252 peer review international scientific papers and 598 presentations at International Conferences and National Meetings. Editor in chief of Current Pediatric Reviews, and in the Editorial board of several International Scientific Journals. Co-Editor of “Neonatology” a worldwide sold textbook with 30,000 downloads from over 500 institutions in the world – from US to China, from Canada  to Cuba, and to many other countries A second edition has been planned, that will be taken into the major reference works program at Springer.

Mary Fewtrell

Professor Mary Fewtrell trained in Paediatrics and has worked in Infant & Child Nutrition Research for the past 22 years. She is currently Professor of Paediatric Nutrition and Honorary Consultant Paediatrician at UCL Institite of Child Health, London, UK; and Chair of the ESPGHAN Nutrition Committee.  Her research interests include the programming of health outcomes by early nutrition and growth, investigated in randomised nutritional intervention trials in both term and preterm infants, with long-term follow-up; and practical aspects of infant nutrition, with studies on breastfeeding, breast milk expression and complementary feeding.

Odile Frauenfelder

Odile Frauenfelder  started her nursing career in 1982, after graduation as a general nurse she specialised in the field of maternity and child’s care.
Her first experience in neonatal care was in 1989 at the level 3 NICU of the Academic VU Hospital in Amsterdam. She worked there from 1989 till the end of 1992 as a neonatal nurse.
In 1993 she started working  as a senior nurse at the NICU of the Sophia Children’s Hospital in Rotterdam. This NICU is the largest level 3+  NICU in the Netherlands and also a NIDCAP certificated unit. In 2001 Odile Frauenfelder started working as a neonatal nurse practitioner on the same unit. In 2003 she received her Master Degree in Advanced Nursing Practice.
Her interests as a neonatal nurse practitioner lie primarily in the care of extreme preterm infants, not restricted to the medical and nursing care but also to the care of the parents during their stay at the NICU.
Next to her clinical work, Odile Frauenfelder is the Nursing President from ESPNIC (European Society for Paediatric and Neonatal Intensive Care) and President of the Dutch Association for Nurse Practitioners (V&VN VS). She was a member of the organising and scientific committees of the ESPNIC/ EAPS congresses in Nice, Verona, Copenhagen, Hannover, Istanbul, Rotterdam and Barcelona She has an extensive network amongst professionals involved in the care of the extreme preterm infants and beyond in the Dutch health care and political world.

Odile is member of the registration commission for Dutch nurse practitioners (legal registration) and she is a member of the advisory board for the Dutch Dentists registration commission.

Odile is knowledge ambassador of the city of Rotterdam.

Since 2010 Odile is a member of the scientific advisory board of the EFCNI

Gorm Greisen

Gorm Greisen is a Clinical Professor of Pediatrics at the Institute of Clinical Medicine Copenhagen University and consultant neonatologist at the Department of Neonatology at The Juliane Marie Centre, Rigshospitalet. Dr. Greisen’s program of research focuses on causes of brain injury in preterm infants, cerebral blood flow and cerebral oxygenation, systematic follow-up studies to evaluate outcomes later in life, growth before and after birth and the consequences of growth in the perinatal period for later health, interventions in the newborn period to improve health later in life, and the ethics of medical research.  He is currently engaged in an attempt to test the clinical value of monitoring cerebral oxygenation by near-infrared spectroscopy in extremely preterm infants (the SafeBoosC project) with a group of neonatologists in 17 European countries.

Boubou Hallberg


Professor Boubou Hallberg (MD, PhD) is the Head of Neonatology at the Neonatal Department at the Karolinska Institute and Karolinska University Hospital. Previously, he held the positions of Clinical Director and senior consultant at  Karolinska University Hospital, Huddinge.

He wrote his PhD at the Institution of Clinical Science, Intervention and Technology, Department of Pediatrics at the Karolinska Institute in Stockholm on neonatal brain injury, hypothermia treatment and outcome following birth asphyxia. His research focuses on new strategies for preventing neonatal brain injury. He is PI/clinical lead for EU-funded projects PreventROP, NEMO, NeoOpioid and BIHIVE.

Additionally he is involved in family-centered and couplet care in neonatology and also directs his attention towards staff and parental interaction and the process of designing an optimal neonatal intensive care unit to support this process for the past several years.

He is also a member at the Swedish Neonatal Society, European neonatal brain club and director of the working group for centralization and transport. He holds several commission of trust and has published more than 20 peer-reviewed articles in leading international journals and several book chapters in textbooks of neonatology.

Onno Helder

Dr Onno Helder is a nurse scientist at the Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands and lecturer at Rotterdam University of Applied Sciences.

Onno Helder has worked as a neonatal intensive care nurse since 1993. He completed his Master in Nursing Science in 2002. He successfully defended his PhD thesis entitled Prevention of nosocomial bloodstream infections in preterm infants at the Medical Faculty of the Erasmus University Rotterdam in 2013. Currently, he works as a neonatal intensive care nurse one day per week. His research interests are infection prevention, implementation strategies, systematic literature studies, and back transport. He has contributed to improvements in the BSc nursing program at Rotterdam University of Applied Sciences, and initiated several multi institutional research projects (institute Health Policy & Management-Erasmus University and Rotterdam University of Applied Science). Since 2015 Dr Helder is vice chair of the Patient Safety and Hygiene group of the Standards of Care for Newborn Health project initiated by the European Foundation for the care of Newborn Infants (EFCNI).

Lena Hellström-Westas


Lena Hellström-Westas, MD, PhD, is Professor of Perinatal Medicine at Uppsala University, and Senior Consultant in Neonatology at the Department of Neonatology at the Uppsala University Hospital, Sweden. She is medical Co-Director at the Karolinska NIDCAP center and scientific advisor in neonatology to the Swedish National Board of Health and Welfare.

Lena Hellström-Westas received her medical degree at Karolinska Institutet in Stockholm and absolved most of her clinical training at Lund University Hospital, Sweden.

Her research on amplitude-integrated EEG monitoring started with a focus on early prediction of outcome in asphyxiated infants and preterm infants. Additionally her research interests include seizure detection, sleep and pain assessments.

She is also a member of the Swedish Neonatal Society and the European Society for Pediatric Research.

Linda Johnston

Professor Linda Johnston was the first Professor and Chair to be appointed in Neonatal Nursing Research in Australia. Her programme of research over the last 20 years has focused primarily on the assessment, and management, of pain in babies requiring neonatal intensive care. In particular, Linda and her team have focused on those babies with complex surgical conditions requiring a prolonged hospitalisation and multiple procedures.  More recently her work has begun to explore the longer term outcomes for surgical babies and their families who experience a neonatal intensive care stay.
Professor Johnston is Dean of the Lawrence S Bloomberg Faculty of Nursing at the University of Toronto, an Honorary Fellow of the Murdoch Children’s Research Institute, Visiting Professor at Soochow University China and Honorary Professor at The University of Melbourne, Vanderbilt University and University of Hong Kong.

She is a Fellow of the American Academy of Nursing and Editor of the journal Neonatal, Paediatric and Child Health Nursing.  Prof Johnston co-convened the 8th International Neonatal Nursing Conference in Belfast, auspiced by the Council of International Neonatal Nurses. As a member of the Council of Ontario University Programs in Nursing, her policy interests include clinical academic career pathways and the advancement of nursing research in the discipline.

Berthold Koletzko

Berthold Koletzko, Prof. Dr., is Professor of Paediatrics at University of Munich and Head of the Division Metabolic and Nutritional Medicine at Dr. von Hauner Children’s Hospital, University of Munich Medical Centre in Germany.

He has published over 700 journal articles (12 161 times cited, H-index 57), 184 book chapters and 29 books. He is editor in chief of Annals Nutrition&Metabolism, associate editor of Current Opinion Clinical Nutrition Metabolic Care and of the journal “Monatsschrift Kinderheilkunde”.

Berthold Koletzko is coordinator of several international research consortia, including the EarlyNutritionProject and the EDPEN Project on Disease Associated Malnutrition in Children. He is further President of the European Society of Paediatric Gastroenterology, Hepatology & Nutrition (ESPGHAN) and Managing Director of the Early Nutrition Academy.

He holds Chair positions in following organisations:

  • Scientific Committee of the National German Society of Paediatrics
  • Child Health Foundation
  • Scientific Committee of National Network Young Families.

He contributes as board member in the German Platform Nutrition and Physical Activity and as scientific advisor in the European Parliament Committee on Consumer Protection as well as in the Innovation Initiative of the Chancellor of the Federal Republic of Germany. He previously was Member and Rapporteur of the European Commission Scientific Committee on Food.

Berthold Koletzko also had been appointed Guest Professor at Poznan Univiversity of Medical Sciences for 2013-14.

Pierre Kuhn


Pierre Kuhn, MD, PhD, is a professor of paediatrics at the University Hospital of Strasbourg, France, and an invited researcher at the Karolinska Institute in Stockholm, Sweden. He works as senior neonatologist and has the position of head of the NICU at the University Hospital Strasbourg since 2007. Following his medical specialty trainings in paediatrics and neonatology, Pierre undertook additional studies for an MSc and a PhD in Neurosciences. His research focussed on the sensory sensitivities of very preterm infants. He continued this line of research during as a postdoctoral fellow at the Karolinska Institute in Stockholm, Sweden. He has published in national and international journals as well as several book chapters.

Pierre is the cofounder of the Group of Reflection and Evaluation of the Environment of Newborns of the French Neonatal Society (GREEN de la SFN) and active group member of a reflecting group on ethical aspects in perinatology.

He is also the president of the Regional Perinatal Network. Pierre is a board member of the Société Française de Néonatologie (French Neonatal Society) and takes an active role in the organisation of the Journées Francophones de Recherche en Néonatologie (French Days of Research in Neonatology). He also serves on the Editorial Committee of the French language journal Revue de Médecine Périnatale (Springer, France) since 2008.

In addition, Pierre is a co-founder and current president of ESPPACES, an association for caregivers and parents of newborns in the Alsace region.

Nicholas Lack

Dr Nicholas Lack is a statistical consultant currently employed as head of statistical methods at the Bavarian Institute for Quality Assurance in Munich. He has gathered over 30 years of international experience in maternal and child health in government health administration assignments in the United Kingdom and Germany.

His specialty lies in benchmarking of hospitals with respect to quality of care. Since 10 years he has been involved in international collaborations such as cross-country comparisons of perinatal health (EURO-PERISTAT) and causal analysis of rare obstetric events and their prevention (INOSS). Dr Lack holds degrees in psychology and education. He is a part-time lecturer of statistics in further education and conducts regular quality management seminars at the Bavarian College of physicians.

Currently he acts as a part-time consultant to the Nigerian Federal health Administration in the introduction of obstetric quality assurance into their regular health care system.

Dr Lack has published on the topics of funnel plots for quality comparisons, the epidemiology of perinatal mortality as well as on methodological difficulties of cross-country comparisons of indicators of maternal child health care.

Jos Latour

Jos M. Latour is Professor in Clinical Nursing at Plymouth University in Plymouth, UK and at Curtin University, Perth, Australia. His clinical post is based at Musgrove Park Hospital in Taunton, Somerset, UK, where he is leading the Clinical School for the Somerset region. The research lines of Jos latour are related to consumer empowerment and involvement in health care. His major research programme is called the EMPATHIC study (EMpowerment of PArents in THe Intensive Care) and is currently implemented in NICUs and PICUs in several European and Asian countries and Australia. Other research programmes are focused on end-of-life care, paediatric sepsis and transition of adolescents with chronic illness from paediatrics to the adult care. Besides research, Jos is actively involved in the promotion of evidence-based and evidence-informed care. His vision is to narrow the gap between research, education, and clinical practice. Jos has published widely in peer-reviewed journals, books and chapters. He is associate-editor of Pediatric Critical Care Medicine and editorial board member of several other international peer-reviewed journals.

Atle Moen

Dr Atle Moen is a consultant neonatologist at the Rikshospitalet Oslo University Hospital. He finished his Medical Degree at the University of Oslo in 1991 and wrote his thesis for his medical doctorate on “Circulatory effect of surfactant replacement”. Since 2002, he is a certified paediatrician. He worked for more than 10 years at the Drammen Hospital, part of VestreViken Hospital Trusts as consultant in paediatrics and neonatology, Clinical Director Neonatology and Medical Director of the Department of Paediatrics. In Drammen Hospital, he planned and implemented a new single room level II NICU in 2012. He also held the position of Clinical Director of the Department of Neonatology at Oslo University Hospital Ullevål 2013 to 2014.

Dr Moen served as a member of the Norwegian National Council for Priority Setting in the Health Care 2013-2014.

Monique Oude Reimer-Van Kilsdonk

Monique Oude Reimer is a NIDCAP consultant at the Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands and Co-director of the Sophia NIDCAP Training Centre, Rotterdam.

Monique Oude Reimer has worked as a neonatal intensive care nurse since 1992. She completed her NIDCAP training in 2000 in Lund  (Sweden).  Currently, she works as a Clinical development specialist at the NICU, where she supports the units in all their efforts to implement individualized care for the patients and their Family.  Currently she is well invested in the Family and Infant Neurodevelopment Education course (FINE) that she has developed together with her colleague Inga Warren, Senior NIDCAP Trainer in London, UK. Monique has presented multiple lectures in English, German and Dutch at different conferences over the past few years. Since 2014 Monique Oude Reimer is chair of the Expert Group on care procedures of the Standards of Care for Newborn Health project initiated by the European Foundation for the care of Newborn Infants (EFCNI).

Charles Christoph Roehr

Charles Christoph Roehr grew up in Western Germany and West-Sussex, UK. He studied Medicine in Berlin, where he also received most of his basic Paediatric training and, in 2009, graduated as a Neonatal Specialist at the Charité University Medical Centre Berlin. He has an M.D. in Pediatric Allergy Immunology and Pulmonology, and a PhD in Neonatal Medicine on “Non-invasive respiratory support of Neonates requiring resuscitation”. Since 2012 he holds a university position as Privatdozent (Assistant Professor of Paediatrics) at the Charité Berlin, Germany. Since 2017 he is Associate Professor at the University of Oxford.

Charles has a keen interest in studying neonatal transition at birth and to improve the various methods of non-invasive respiratory support/ ventilation (NIV) applied to neonates. Another interest of his is medical education and postgraduate training. For many years, he has conducted national and international seminars on different neonatal topics. In his role as President of the European Society for Paediatric Research (ESPR), European Society of Neonatology (ESN) Officer of Education, deputy chair of the European Scientific Collaboration of Neonatal Resuscitation Research and Chair of Paediatric and Neonatal Intensive Care Section of the European Respiratory Society (ERS), Charles is keen to promote neonatal education, resuscitation research and respiratory health throughout Europe and beyond.

Charles joined the Neonatal Consultant team at the Oxford University Hospital Trust in late 2014, following an 18 month research fellowship at Monash University and the Royal Women’s Hospital in Melbourne, Australia. Charles has two grown up daughters. Apart from spending time with his children, he enjoys travelling, photography and reading.

Dietmar Schlembach

PD Dr. med. Dietmar Schlembach (MD) is an expert in Maternal-Fetal Medicine and Obstetrics and Head of the Clinic of Obstetrics (Vivantes Clinicum Berlin-Neukölln) as well as faculty member of the Friedrich Schiller University of Jena (Germany), Dept. of Obstetrics and Gynecology.

He studied medicine in Giessen and Thessaloniki and was trained as an Obstetrician and Maternal-Fetal Specialist at the University of Erlangen until 2002. During that time he also started his scientific career mainly on the field of pregnancy complications (such as hypertensive disorders and intrauterine growth restriction) and prenatal diagnosis and therapy.

In 2002 he moved to Galveston, TX, USA, where he was working as a research fellow at the University of Texas Medical Branch with Prof. RE Garfield, one of the world’s leading expert in preterm labour.

In 2004 PD Dr Schlembach became head of the division of prenatal diagnosis at the University of Graz, Austria.

From 2009 until 2011 he held an appointment at the Prenatal Medicine Center Munich. 2012 to 2014 he was Professor for Prenatal Diagnosis and Fetal Physiology at the University of Jena. Since May 2014, he is Head of the Department of Obstetrics in Berlin-Neukölln (the Clinic known as the “Birth Place of Perinatal Medicine”). Since 2015, he is a member of the Trustee Board of the European Foundation for the Care of Newborn Infants (EFCNI).

PD Dr Schlembach addresses the specific problems and treatment of pregnancy complications and prenatal diagnosis. His clinical and research focus is screening, diagnosis and treatment of hypertensive disorders and intrauterine growth restriction, preterm birth and prenatal diagnosis and therapy of fetal abnormalities.

He is currently chairman of the Working Group on Hypertensive Disorders in Pregnancy / Preeclampsia of the German Society of Gynecology and Obstetrics and secretary of the Working Group Obstetrics and Prenatal Medicine (both working groups of the German Society of Obstetrics and Gynecology).

Umberto Simeoni

Umberto Simeoni is Professor of Paediatrics at Faculté de Biologie et de Médecine, University of Lausanne and Director of the Division of Pediatrics and of the Developmental Origins of Health and Disease (DOHaD) Research Unit at CHUV University Hospital in Lausanne Switzerland.

He graduated at Louis Pasteur University, Strasbourg, France, where he later worked in the position of Professor of Paediatrics and Director of Neonatal and Pediatric Intensive Care Units at Strasbourg University Hospital, up to 2001. He then moved as Professor of Pediatrics and Director of the Department of Neonatology at Aix-Marseille University and AP-HM University Hospital in Marseille, France until 2014.

His research is oriented towards the Developmental Origins of Health and Disease (DOHaD), with a special focus on the developmental programming of the cardio-vascular system in conditions of perinatal disease, such as intrauterine growth-restriction, preterm birth or exposure to maternal overweight/obesity and gestational diabetes. He also is highly interested in perinatal bioethics. He authored and co-authored more than 150 referenced articles, several books on neonatology, and more than 300 invited lectures. Umberto Simeoni is currently President of the European Association of Perinatal Medicine and President of the Société Francophone DOHaD.

Pierre Tissières

Pierre Tissieres, MD, PhD, is Professor of Pediatrics at the University Paris South, and Director of the Pediatric Intensive Care and Neonatal Medicine at the Paris South University Hospitals. He is leading the Endotoxins, Structures and Host Responses Group at the Department of Microbiology, from the Institute of Integrative Biology of the Cell, Paris Saclay University. He graduated from the University of Lausanne Medical School, and obtained a PhD in molecular biology from the University of Geneva School of Sciences. He is specialized in molecular immunology and neonatal critical care. Pierre Tissieres’s current research is mainly focusing on the immune response of neonates and premature infants to Gram negative sepsis.

Pierre Tissieres is a member of the executive committee of the European Society of Pediatric and Neonatal Intensive Care, and is Chair of the scientific affairs of this society.

Agnes Van den Hoogen

Dr. Agnes van den Hoogen is a nurse scientist at the University Medical Centre of Utrecht (UMCU) – Wilhelmina Children’s Hospital in Utrecht, The Netherlands. She has been a neonatal intensive care nurse since 1985. In 2000, she graduaded in Health Science at Cardiff University, Wales, United Kingdom. In September 2009 Agnes received her Ph.D, topic: ‘Infections in Neonatal Intensive Care its Prevalence, Prevention and Antibiotic use’ at the University of Utrecht, medical faculty of the University Medical Centre Utrecht. At present she is a postdoc researcher, neonatal nurse at Neonatology at Wilhelmina Children’s Hospital, UMCU and lecturer at the university Utrecht. She is qualified in education, teacher at the University of Utrecht and engaged in various educational activities.
Agnes van den Hoogen is past president of the European Society for Pediatric and Neonatal Intensive Care (ESPNIC). She is actively involved as a committee member in the Council of International Neonatal Nurses (COINN).

Aleid Van Wassenaer-Leemhuis

Aleid van Wassenaer-Leemhuis MD, PhD  is pediatrician and the head of the follow up program of NICU graduates at the Emma Children’s Hospital, Academic Medical Center, University of Amsterdam.

She is consultant to the Expertise Center for Post discharge developmental Support (EOP-Nl, Expertise centrum Ontwikkelingsondersteuning voor Prematuren).

Between 2003-2013 she was Chairperson of Dutch society of Neonatal follow up and between 2005-2013 Adjunct Professor of Pediatrics, New York Medical College.

She participated in the core writing group of the Dutch guideline on aftercare for preterm and small for date neonates which was a joined effort of the preventive primary healthcare, the Dutch society of paediatrics and the Dutch association of parents of preterm  infants .

She has Amsterdam-based, national and international collaborations within which she sets up and carries out research in multi-disciplinary groups mostly aiming at improving long term outcomes of preterm infants and infants born after fetal growth restriction. This concerns primary, secondary and tertiary prevention of neurodevelopmental disabilities, mostly within in the age group 0 to 13 years. Funding for this research comes from all kinds of sources, from hospital based institutes to US based National Institutes of Health (NIH).

Björn Westrup

Dr Björn Westrup, MD, PhD, is a senior consultant in neonatology and Director of the Karolinska NIDCAP Training & Research Center at Astrid Lindgren Children’s Hospital, Karolinska University Hospital and lecturer at Karolinska Institute.

Dr Westrup’s field of research is mainly medical and physiological aspects of developmentally supportive care, family centered care and iron metabolism. He has since its start in 1999 been director of the Karolinska NIDCAP Training & Research Center which is an institution that certifies individual professionals in family centered developmentally supportive care. Furthermore, it certifies other trainers. The Karolinska NIDCAP center was the first NIDCAP Center in Europe has played an essential role in establishing and supporting other NIDCAP training centers in Modena, Italy; Brest, and Toulouse, France; Brussels, Belgium; London, UK; Rotterdam, NL; and Aarhus Denmark. Dr Westrup has performed two randomized controlled clinical trials in the field and has been pioneering the development of the most advanced stage of family centered developmentally supportive care: couplet care – a care model that minimize the separation of infant from its mother by if needed providing medical care also for the mother together with her infant in the neonatal unit. For his expertise in changing the care and designing nurseries to become more family oriented, Dr Westrup is a frequent invited speaker at scientific conferences and is regularly hosting leadership teams, that in the planning stage of building new nurseries, are visiting his unit to seek his advice. Dr Westrup serves in the Scientific Advisory Board of European Foundation for Care of Newborn Infants.

Dieter Wolke

Professor Dieter Wolke holds the degrees Dipl-Psych, Ph.D. and is a Chartered Psychologist by the BPS (C.Psychol, AFBPS).  In December 2014 he received a Dr rerum naturalis honoris causa (Dr rer nat h.c.) from the University of Bochum, Faculty of Bochum, for his contribution to science on the development of at risk children. He currently works at the University of Warwick, Department of Psychology and Warwick Medical School and is Professor of Developmental Psychology and Individual Differences.

Professor Wolke studied at the University of Kiel (Germany) and University of London for his initial Psychology Degree (Dipl-Psych) and obtained his Ph.D from the University of London Faculty of Science. He has worked at different institutions at the University of London (King’s College; Institute of Child Health, Hospital for Sick Children) and the Universities of Munich, Hertfordshire and Bristol. Before his appointment at the University of Warwick, he worked in the research funding sector (Scientific Director of the Jacobs Foundation, Zurich, 2004-2006) while holding Visiting Professorships at the Unversities of Bristol and Zurich.

Much of his research is interdisciplinary (psychology, social and medical sciences) and longitudinal. He is involved in a range of follow-up studies of preterm children in the UK and Germany including the EPICure Study, the Bavarian Longitudinal Study and the Millennium Cohort Study. His particular interest is of how preterm birth affects brain development and psychological development and quality of life. In addition he is a Co-PI of the UK Household Longitudinal Study with special interest in biomarkers and involved in several studies concerned with the social development of children.

Professor Wolke has published widely and is on the editorial boards of a number of journals and several scientific advisory boards.

Luc Zimmermann

Luc Zimmermann became MD in 1984 at the Catholic University of Leuven, Belgium and did his residency in paediatrics at the same university, in the University Hospital Gasthuisberg Leuven, Belgium (1984-1989). He trained as a Fellow in Neonatology at the Hospital for Sick Children and the University of Toronto Perinatal Fellowship Program in Toronto, Canada from 1989 to 1992. From 1992 to 2003 he was a staff neonatologist at the Erasmus Medical Center – Sophia in Rotterdam (Netherlands), where he was Chief of the Division of Neonatology a.i. from 2000 to 2003. His PhD thesis (in 1995) was titled “Regulation of CTP:phosphocholine cytidylyltransferase in fetal type II cells”. In 2003 he became a staff neonatologist at the Academic Hospital Maastricht, in 2004 Professor in Paediatrics and in 2005 Chief of the Division of Neonatology.

In 2006 he became Chairman of the Department of Paediatrics and is currently the Department Director of the Residency Program in Paediatrics, as well as Division Leader in Research Institute GROW (Oncology and Developmental Biology). He is past president of the European Society of Paediatric Research (ESPR). Since 2017, he is a member of the Trustee Board of the European Foundation for the Care of Newborn Infants (EFCNI).

EFCNI Parent Advisory Board members

Mandy Daly

Mandy Daly

Mandy Daly is a parent of a preterm infant born in 2006 and is Director of Advocacy and Policy Making with the Irish Neonatal Health Alliance. She has been advocating on behalf of families of preterm infants since 2006 and was instrumental in the formation of the collaborative platform in Ireland that resulted in the production of Ireland’s inaugural benchmarking report on prematurity and the implementation of a 24 hour Neonatal Transport Service. Mandy works alongside healthcare professionals, educators, industry partners, government officials and researchers and is patient advocate on several research projects including a pilot follow-up care clinics in the community project, designing a new National Children’s Hospital for Ireland and introducing webcam technology into NICUs. She oversees neonatal curriculum reviews, lectures to students entering the field of neonatology and is active in several system review projects ie transport and primary eye-care services.

Paula Guerra

Paula Guerra

Paula Guerra is one of the founders of the Portuguese preemies association XXS – Associação Portuguesa de Apoio ao Bebé Prematuro, being a board member of XXS since the creation of the association in November 2008.

She has two daughters, one born in 1993 as a term baby and a second one, an extremely premature girl, born in 2001 with 26 weeks of gestation and 615g of weight.

Since 1993, Paula worked in IT development departments of three diferent Portuguese banks and she now coordinates the IT Human Resources Department in one of those Portuguese banks.

Paula has been representing XXS within EFCNI since the first joint parents’ organization meeting taking place in 2008, when XXS had only one week of existence

Tomasz Makaruk

Dr Tomasz Makaruk is the founder and Chairman of the Polish Premature Baby Foundation (Fundacja Wczesniak Rodzice-Rodzicom), which has existed since 2004, shortly after Tomasz became a father to a preemie born in week 29 at 1600 g.

Tomasz holds a PhD in Economics from the Warsaw School of Economics and also completed a course in Managing Professional Service Firms at Harvard Business School Executive Education. During his work with the Premature Baby Foundation, Tomasz was also the co-creator of a highly successful  fundraising campaign for the organisation in 2010.

Over the past 15 years Tomasz has worked in both management and executive positions within the marketing departments of top international corporations. Tomasz also co-owns and manages a marketing firm specialised in building brand loyalty.

Tomasz is an active communicator and in addition to  keeping a blog on marketing and economics, he has written a number of articles that have appeared in the press. He speaks Polish, English and Russian.

Livia Nagy Bonnard

Livia Nagy Bonnard

Livia has been one of the founding members of Right(s) beside you Association. The Association brings together doctors, medical professionals, policy makers, NGOs and the parents of premature children in order to improve the quality of care. She deals mainly with parental support, especially giving advice to parents who have special needs children. Her work has been involved in different forums for parents of special needs children from 2006 onward.

Though born in Hungary, she now lives on the French Swiss border, so she has a deep insight into the NICU system in Hungary, France and Switzerland. She is a mother of 4 children, 3 girls, and a preemie boy who was born at gestational week 27 and who suffered from PVL.

Livia is a trained nurse, she worked mostly with babies and children in cardiac departments and a CICU (cardiac intensive care unit).

Her motivation to join the EFCNI Parents Advisory Board, is to raise her voice for preemie parents, especially from Eastern European Countries. Parents from these countries are facing deep concerns and challenges – being affected by the same EU standards and regulations as parents of premature babies in other countries.

Gert van Steenbrugge

Gert Jan van Steenbrugge

Dr Gert van Steenbrugge is father of two preterm children, born respectively at 34 and 26 weeks of pregnancy. He is past director of the Dutch parent organization VOC (‘Vereniging van Ouders van Couveusekinderen’) and represents The Netherlands in EFCNI since the first joint parents’ organization meeting in 2008.

In 1994, Gert started as volunteer at VOC and was board member and chairman till 2003. From 2003 to 2017, he was director of VOC.

Gert holds a Ph.D. in biochemistry and worked for many years in biomedical research. Having this background, his special interest and activities for the VOC organization has always been focused at medical advocacy work. In close cooperation with care providers he is involved in aftercare and follow-up programs, was member of several guideline committees, participates in research groups and represents parents in the Call-to-Action NL platform, a local continuation of the EFCNI initiative.

Along with parents and professionals, he was the founder of the ‘Neokeurmerk’, a quality mark for the Neonatology and the Mother and Child centers of the Dutch hospitals. This program is based on the parent perspective, with the focus on developmental and family-centered care.

Eleni Vavouraki

Eleni Vavouraki

Dr Eleni Vavouraki is a licensed Pulmonologist with a PhD in pulmonary rehabilitation; she is also specialized in Complementary and Alternative Medicine.

After becoming an aunt of triplets, that were born very prematurely (26+4), she together with the triplet’s parents decided to co-found the association Ilitominon, of which she is the President since 2011.

She has a wide teaching experience as a faculty member of the Health and Care Professions Department of the Technological Educational Institute of Athens for 23 years. She is now working as a medical advisor to a company of natural products. At the same time, she participates as a Scientific Collaborator in the Medical School of the University of Thessaly teaching postgraduate courses.

Eleni is also member of the Board of Therapeutic Riding Association of Greece, a NGO for therapeutic riding, where children with disabilities (many of them due to prematurity) are helped to cope, build their self-esteem and improve their physical condition. She is married and mother of two sons and she speaks Greek, English and some French and Spanish.

Yannic Verhaest

Yannic Verhaest

Yannic Verhaest is the Chairwoman of the Belgian parents organisation VVOC (Vlaamse Vereniging voor Ouders van Couveusekinderen).

She joined the VVOC in 2007 as an active boardmember and became Chairwoman in 2013.

She is mother of two children, the oldest born at 30 weeks of gestation.
Yannic is a clinical psychologist, psychoanalytic psychotherapist, Infant Mental Health specialist and works as research assistant at the UPC KU Leuven and as affiliated staff of the Center for Psychoanalysis and Psychodynamic Psychology at the University of Leuven.

She speaks Dutch, French and English. She has been representing Belgium within EFCNI since the first joint parent organizations meeting in 2008. She collaborates closely with EFCNI to improve prevention of preterm birth and for the best possible care for preterm infants and their families in Belgium and Europe.

Mónica Virchez

Mónica Virchez

Mónica is mother of triplets born in 29 weeks of gestation in London, UK. Her babies received NIDCAP attention 11 years ago in the Winnicott Neontatal Unit in St. Marys Hospital.

Mónica has been supporting the organisation PREMATURA in Spain for 13 years, 10 of which she is president the association. She is a clinical Psychologyst as well as a trainer in baby massage, infant reflexology, kangaroo mother care. She is a clinical psychologist and attended a post-degree-course in prematurity at the Italian Hospital in Argentina.

In her daily work, she is in contact with issues like: attachment, bonding, kangaroo mother care, baby massage, reflexology for babies, breast-feeding, follow up for premis, pregnancy, baby body language and stress in mothers, Brazelton, NIDCAP. She has working experience with babies, small children, parents and families of preterm infants and guided workshops with parents groups.

Mónica is a member of Multiple Births Association UK, Baby Massage, National Health Ministry Program for Natural Births in Spain, Pro-birth National Platform Spain, Kargaroo Mother Care, Reflexology Association, Winnicott Baby Foundation, EFCNI and is in regular contact with hospitals and associations in Spain and other countries.

Mónica lived in Italy, UK, Germany and Spain and speaks fluently Spanish, English and Italian.

EFCNI Executive Board members

Silke Mader

Silke Mader

Silke Mader is the Chairwoman of the Executive Board and co-founder of EFCNI. In 1997, her twins were born in the 25th week of pregnancy, and were not given the appropriate care. Unfortunately, one of them died a few days after birth, leaving the parents and the sibling behind. During her time in hospital and afterwards, she was faced with the non-existence of support of any kind, the absence of public awareness and the lack of information and education for parents during pregnancy. She felt that no parents should ever undergo such an awful experience again.

As the situation throughout Europe is distressingly similar and preterm children urgently need a voice not only within Europe but also worldwide, she decided to take on the role of chair on the Executive Board of EFCNI.

Silke Mader is co-editor of the EFCNI Benchmarking Report “Too little, Too Late? Why Europe Should do more for Preterm Infants”, “Caring for Tomorrow” – the EFCNI White Paper on Maternal and Newborn Health and Aftercare Services” and technical editor of the “Born too Soon” Global Action Report on Preterm Birth”. Besides this, Silke Mader is author and editor of many other publications on topics related to maternal and newborn health.

In 2012 Silke Mader was awarded the “Prix Courage” by ZDF television programme “ML mona lisa” in cooperation with the cosmetics company Clarins. 2013 she received the Medal for Particular Services to Bavaria in a United Europe. Since 2014 she is Honorary Lecturer at the School of Nursing and Midwifery, Queen’s University Belfast, Northern Ireland.

In 2015, Silke Mader has been awarded as social entrepreneur and Ashoka Fellow. Since then, she has become a member of the organization’s global network.

At the ALL Ladies League (ALL) – Women Economic Forum 2016 in New Delhi, India, Silke Mader received the “Iconic Innovative Trailblazer of the Decade” award.

In October 2016, she was awarded with the Bavarian State Medal for Services concerning Health and Long-term Care by Melanie Huml, the Bavarian State Minister for Health and Long-term Care.

Neil Marlow

Prof. Neil Marlow trained in clinical medicine at Oxford and UCL. His first research post was in Manchester where he carried out one of the first and largest single observer outcome studies following low birthweight. Since that time he has continued to focus on the sequelae of perinatal events and in particular neuropsychological outcomes. He has led several large studies in the field including EPICure – a national cohort study of birth before 26 weeks of gestation that has guided national policy (

Prof. Marlow was appointed Professor of Neonatal Medicine at UCL in September 2008, having held the chair of Neonatal Medicine in Nottingham since 1997. He is Director of the Institute for Women’s Health and former President of the European Society for Paediatric Research. His research interests include early care of the newborn, particularly in relation to brain development and injury, and he is PI on a range of clinical trials aimed at improving developmental outcome for the very preterm infant.

Nicole Thiele

Nicole Thiele joined EFCNI in early 2010. She has a diploma as European Secretary/ESA and holds a university degree in Economics, Management and Business Administration, speaks English, French and Spanish. She lived in Paris for several years and has  extensive experience in different positions within multi-national companies.

With her family experiencing the consequences of an extremely preterm birth about 40 years ago, she is personally engaged to drive forward the prevention of prematurity and especially the philosophy of family centred care and parents empowerment, crucial contributors to give a baby the basic human right for a best possible start in life.