Fact Sheet EFCNI

The European Foundation for the Care of Newborn Infants

What is EFCNI?

The "European Foundation for the Care of Newborn Infants" (EFCNI) is a network for all families with newborn infants who face health problems due to a preterm birth or other newborn infants' health issues. The foundation was the initiative of parent groups, scientists and the founders in 2008. The foundation encourages all those involved or interested in this issue to interact and exchange ideas. It promotes mutual understanding and serves as a platform for the initiation, coordination and integration of all local, national and international activities involving the care of newborn infants, prevention of preterm delivery, long-term care of preterm infants and support for parents and relatives. EFCNI is particularly keen to establish a link between parents and doctors/scientists.

The Aims of the Foundation

The overall aim of EFCNI is to raise awareness of preterm birth in society, among political stakeholders and public institutions.

Therefore, the foundation combines the strengths of scientists, experts and parents' organisations in order to:

Ensure the best possible care of newborn and preterm infants in Europe
Establish a European network with national parents' organisations and political stakeholders
Promote research and the implementation of measures which prevent preterm birth
Enable the medical, psychological and socio-pedagogical support of the concerned parents
Improve the long-term health of newborn and preterm infants

The Structure of the Foundation

EFCNI consists of a Board of Directors and a Board of Trustees. The Board of Directors is responsible for representing and managing the foundation. The Board of Trustees assists the Board of Directors in an advisory, supportive and controlling role. EFCNI is supported by political, scientific and parental advisory bodies, academic associations and marketing specialists as it implements measures to achieve its set objectives.

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Projects

The European EFCNI parents' organisations meetings

Twice a year meeting of the European parents' organisations
Aim: Encouragement and support of the collaboration and exchange among the national parents' organisations
First meeting of parents' representatives from 18 countries in 2008 in Rome
7th parents' organisations meeting end of November 2011 in Brussels

World Prematurity Day

November 17th is the official Prematurity Awareness Day since 2009
The Prematurity Day had been initiated by EFCNI and is celebrated around the globe with many different activities
In 2011 for the first time the Global Alliance, which unites African, Australian, European and U.S. umbrella associations of parents' organisations jointly launched the World Prematurity Day
Aim: Raising awareness in public and among political stakeholders for the topic of preterm birth in general, prevention of preterm birth and the problems and risks in the development of preterm children

European Benchmark Report

„Tool litte, too late: Why Europe should do more for preterm infants", 2009/2010: First comparative and systematical analysis of 13 European countries and the respective surrounding conditions of preterm birth
Major results of the Benchmark Report:
- a troubling lack of coordinated national and European policy initiatives to improve the quality of treatment and care of preterm infants
- high diversity among the 13 analyzed countries regarding the frequency of illnesses among preterm babies and newborns with illnesses who died after birth
- huge differences in the European countries concerning pregnancy check-ups, maternity leaves before and after birth, criteria of treatment, later check-ups etc.

Interest Group at European Parliament

The foundation of the Interest Group on maternal and neonatal health of Members of the European Parliament (MEPs) was initiated by EFCNI patron and MEP Dr. Angelika Niebler together with her parliamentary colleague and paediatrician, MEP Dr. Peter Liese
Aim: Create awareness and gain support for the political challenges of preterm birth throughout Europe
The Interest Group will meet approximately three times a year in order to improve the maternal and neonatal health situation.

„Call to Action for Newborn Health" in European Parliament

"Call to Action for Newborn Health" (ten-point plan) to be launched in the European Parliament on November 23rd, 2011
EFCNI calls on European and national policy makers, payors, patient and parents' organisations, healthcare professionals, academics, industry and the public
Aim: to unite and work in partnership to ensure that each baby born in the EU has the best possible start in life
Steps: Members of European Parliament are called to establish national plans of action for better care during pregnancy as well as for preterm babies and newborns with illnesses

EFCNI White Paper on maternal and neonatal health and aftercare

The EFCNI White Paper will be launched in the European Parliament on November 23rd, 2011
Aim: EFCNI is calling for a change and an official European recommendation on maternal and neonatal health and aftercare as part of the European healthcare strategy by the year 2020.
The White Paper intends to:

address the existing disparities in Europe,
outline the current challenges in maternal and neonatal health from a parents' perspective and with the strong support of healthcare experts
give recommendations to European politicians and stakeholders.

Topics addressed through the EFCNI White Paper concern mainly:

Quality of care standards
Education and training for healthcare and research professionals
Funding of research to improve prevention, treatment, care and outcomes
Social and financial support of concerned families
Public awareness

CaPaNi Award

Aim: promote research improving medical and psycho-social care for preterm infants and their families
The award is European-wide
The independent Scientific Advisory Board composed of international scientists decides on the award winner
In 2009 the CaPaNi Award was received by Prof. Dr. Mario Rüdiger for his research about chronic lung disease in preterm infants

Care Award

Aim: highlight the achievements in the care of preterm infants and their families
In 2008 the Care Award was received by Prof. Dr. Remo Largo for his unique global achievements, providing key contributions to our understanding of normal child development, and his establishment of aftercare services in Zurich, Switzerland, for former preterm infants

Sponsorships

EFCNI receives financial support from its partners Abbott, Nestlé Nutrition, Dräger and other private businesses and persons.

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