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: 25 representatives from 18 nations 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 establish ment, 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.