History: Where we come from

The history of EFCNI starts with a a very personal experience: In 1997 founding member Silke Mader was pregnant, expecting twins. What was supposed to be a happy experience, turned out to be a life-changing one: At 25 weeks of pregnancy, the babies were delivered due to severe pre-eclampsia. One of them passed away after one week, the other one is now a healthy teenager.

In the hospital, little information about the new situation, the wellbeing of her children, appropriate treatment and care for her and her babies as well as the lack of social support determined Silke Mader’s and her family’s’ life. Shaped by her experience she took action and joined a local parent initiative in Munich, Germany.

Some years later and after heading the national parent organisation in Germany, she cofounded EFCNI. Together with PD Dr Matthias Keller, neonatologist, Jürgen Popp, a fellow affected father, who lost triplets due to preterm birth and the support of lawyer Thomas Föringer, they took action and wanted to bring fighting for preterm infants and their families to a European level. EFCNI was born.

The founders contacted European national parent organisations, motivating them to join forces on a cross-border initiative to improve the situation of preterm infants and their families.

Declaration of Rome

November 2008 marked the beginning of our pan-European collaboration: representatives from 12 organisations from across Europe came together to discuss, what they could do to achieve their common goals. During this event, we compiled the “Declaration of Rome”, ten demands for preterm infants and their families, that we handed over to politicians of the European Parliament. The groundwork was laid for another milestone: Establishing World Prematurity Day.

The Parent Organisations Meeting has become an annual tradition where we all meet up to draw conclusions of our work, exchange best practices and plan upcoming events.

Since its establishment, EFCNI has grown into a renowned organisation and advocate for preterm infants, ill newborns and their parents in Europe. For more information on our work please refer to our projects.

15 years of EFCNI - Our milestones

  • EFCNI gets involved in further EU-funded research project Research on European Children and Adults born Preterm (RECAP preterm)
  • EFCNI is awarded as a Landmark 2017 by the initiative Germany – Land of Ideas
  • Co-organisor of 2nd jENS Congress in Venice, Italy
  • Publication of Position Paper Involvement of parent representatives in neonatal research
  • Start of the transregional Milk Banks Project
  • Silke Mader is honoured with the Bavarian State Medal for Health and Care
  • Launch of the A Strong Strant for Little Heroes campaign
  • EFCNI grows and recruits its 10th employee
  • EFCNI gets featured as best practice example in the editorial of The Lancet
Bayerische_Staatsmedaille_Preisverleihung Silke Mader_(c)_Bayerisches Staatsministerium für Gesundheit und Pflege
  • EFCNI gives workshop Newborn Infant hosted and organised by the EU Parliament
  • Co-organiser of the first Congress of joint European Neonatal Societies (jENS) in Budapest, Hungary – the first medical congress actively integrating parent representatives
  • EFCNI participates and presents at G7 summit in Berlin
  • Silke Mader becomes an Ashoka fellow
01_jENS2015_copyright EFCNI
  • Silke Mader becomes honorary lecturer at the School of Nursing and Midwifery, Queen’s University Belfast, Northern Ireland
  • EFCNI takes on work package lead of EU-funded research project Screening to Improve Health In very Preterm Infants in Europe (SHIPS)
  • Launch and kick-off event for European Standards of Care  for Newborn Health  (ESCNH) at the EU Parliament with an art exhibition
  • Launch of the Every Newborn Action Plan (ENAP), EFCNI functions as supporting partner
  • Silke Mader is awarded the Prix Courage
  • Start of the large-scale project European Standards of Care for Newborn Health (ESCNH)
  • Silke Mader is awarded the Medal for Particular Services to Bavaria in a United Europe
  • EFCNI and the WHO give a joint conference on maternal and newborn health at the Bavarian representation in Brussels
  • White Paper Caring for Tomorrow includes perinatology, neonatology and follow-up care in one paper for the first time
  • EFCNI moves into its new Munich headquarters
  • World Prematurity Day is celebrated together with supranational cooperative partners
  • EFCNI is patient representative at the World Health Organization (WHO)
  • World Prematurity Day gets its own logo and partner organisations initiate purple lightings of landmarks all over the world
WPD Grafik
  • Publication of the A healthy pregnancy brochure, adding the spectrum of maternal health to the foundation’s portfolio
  • EFCNI is supporting organisation, technical editor and co-author of Born too Soon – the Global Action Report on Preterm Birth
  • International Prematurity Awareness Day is renamed in World Prematurity Day
Born too soon report
  • Nicole Thiele joins EFCNI as first employee
  • Starting a network of supporters in the EU Parliament
  • Benchmark Report Too little, too late published in Brussels
  • Introducing the international Socks for Life campaign; the small socks line becomes the signature feature
  • First election of the Parent Advisory Board
  • EFCNI exhibits at the European Academy of Paediatric Societies (EAPS) in Copenhagen
  • First public celebration of International Prematurity Awareness Day
  • EFCNI hosts first own congress on preterm birth in Berlin
  • Founding of EFCNI in April 2008
  • Developing a distinctive design and logo EFCNI releases charity song Sing me another song composed and donated by Swedish composer and songwriter Robert Wells
  • 17th November declared as International Prematurity Awareness Day on first Parent Organisations Meeting in Rome, Italy