Empowering Parents with Knowledge: Neopedia

With this ambitious project, GFCNI addresses a prevalent need: to date, there is no global information platform for families with preterm and/or hospitalized newborns and infants.

The website https://www.neopedia.org provides comprehensive and easy-to-understand information about prematurity and the NICU environment, geared towards at-risk pregnant women and their partners/families as well as other caregivers of preterm and sick infants. The website content addresses the time in the NICU as well as the period after discharge on a global level. Information is available in five languages with more languages to be added in the coming years. It is meant to empower parents with knowledge and information so that they are better equipped to meet the challenges of preterm birth and NICU stays.

For GFCNI, this project marks another milestone as the foundation charts its course with its global mission and vision for maternal and newborn health.

Going Global

After 17 years of advocacy and activism, EFCNI rebrands as the Global Foundation for the Care of Newborn Infants (GFCNI), marking a transformative milestone in its history. This rebranding reflects the foundation’s growth, its increasing influence in global and supranational communities, and its active involvement in international discourses on maternal and neonatal health. Over the years, EFCNI’s network has expanded to include patient and parent organizations from every continent, a truly global alliance now fully embodied in GFCNI’s name and purpose.

Going global also involves a comprehensive overhaul and relaunch of the foundation’s website, creating a more accessible and dynamic platform to support its worldwide mission and community. As part of this evolution, GLANCE – the Global Alliance for Newborn Care, launched in 2019 as EFCNI’s first global initiative – has been fully integrated into GFCNI. This transition honors GLANCE’s legacy of uniting parent and patient representatives from across the globe and advancing structural and organizational improvements in newborn care.

Additionally, GFCNI kicks off its ambitious “HOPE Study,” an international research project designed to gather insights into the experiences, unmet needs, concerns, and burdens faced by parents and caregivers of hospitalized newborns. Launching in April 2025, the survey reaches families worldwide whose infants were born since January 2022 and required special or intensive care, such as preterm, acutely sick, or small-for-gestational-age infants. In collaboration with leading organizations such as ESPR, COINN, UENPS, NIDCAP, ANA, and the WHO Collaborative Group, GFCNI aims to uncover vital information on topics including the burden of care, pregnancy, birth, NICU experiences, discharge, follow-up, and infant- and family-centered developmental care (IFCDC). Data collection concludes by autumn 2025, with results slated for publication and dissemination in 2026.

By going global, GFCNI reaffirms its commitment to its international network of partners, supporters, and allies, as well as its enduring vision: to improve maternal and newborn health so that every baby born receives the right care at the right time in the right place.

Strengthening the Patient Voice in Medical Discourses: Dos and Don’ts in Neonatology

EFCNI joins forces with UENPS (the Union of European Neonatal and Perinatal Societies) to organize a new congress format entitled “Do’s and Don’ts in Neonatology”. The congress brings together doctors, nurses, midwives, and parent and patient representatives to participate in workshops and attend presentations focusing on best practices in neonatal care. The inaugural instalment takes place in Ljubljana, Slovenia, and is slated to occur every two years thereafter.

For EFCNI, this new congress format is an excellent way to unite the medical community and its extensive network of parent and patient organizations for fruitful exchange. It showcases the foundation’s skills, honed over years of dedicated work, in organizing education activities and disseminating knowledge. It also strengthens ties and relationships within the community.

Changing European Law through Dedicated Advocacy

After more than a decade of advocacy by EFCNI and international high-level experts in the field of human milk, the Council of the European Union adopts new rules to broaden the scope of substances of human origin (SoHO), including human milk and intestinal microbiota.

This step will greatly improve the safety and quality of these substances used in healthcare, significantly benefiting newborn health. The new regulation covers every step from registering and testing donors to collecting and processing SoHO, applying them to humans, and monitoring clinical outcomes. These changes will better protect donors, recipients, and children born through medically assisted reproduction. The goal is to improve the current legal framework and make it more adaptable to scientific and technical progress.

For EFCNI, this represents a significant milestone, as the foundation’s persistent advocacy and collaboration with experts and parent and patient representatives have finally yielded tangible change.

High Accolades for Silke Mader

EFCNI’s co-founder and Chairwoman, Silke Mader, is awarded the Cross of the Order of Merit (“Bundesverdienstkreuz”) of the Federal Republic of Germany. This recognition is a testament to the decades of tireless work and dedication on behalf of preterm and hospitalized infants and their families. It is a collective achievement, reflecting the unwavering commitment of EFCNI’s entire community of partner parent and patient organizations as well as medical societies. The award also highlights how progress is possible when all stakeholders come together with a shared vision. It recognizes EFCNI as an influential parent and patient voice, demonstrating the significant impact that unified efforts can achieve.

The European Standards of Care for Newborn Health (ESCNH) Turn 5!

It is a busy year for the ESCNH as they celebrate their 5-year anniversary! In March, EFCNI calls for a Chair Committee Meeting in Freising, Germany, to discuss the road ahead. Implementation projects, and ways to foster them, take center stage in these discussions. Moreover, 76 individual standards are up for their scheduled review – a mechanism built into the ESCNH to ensure that they remain up-to-date and reflect the current state of the art. It is also the year in which the Ambassador Programme is launched, serving as a platform for individual advocates and change-makers who promote the ESCNH and drive implementation processes in their communities.

For EFCNI, the year marks a milestone for the ESCNH. After years of planning, developing, and organizing, the focus shifts towards disseminating and implementing them in different European countries.

Zero Separation. Together for better care!

EFCNI announces the results of its global survey on parents’ experiences during the first year of the COVID-19 pandemic at a digital launch event. Subsequently, the EFCNI team publishes the results in several distinguished medical journals and presents them at conferences to highlight families’ often harrowing experiences and raise awareness about the dangerous impact on infant and family health.

The call for “Zero Separation” – ensuring that parents have access to their baby in the NICU at all times – is echoed by EFCNI’s partner parent and patient organizations as well as medical societies across Europe and beyond. It shows that EFCNI is a leading voice in newborn health, generating new knowledge and understanding while advocating for family rights and equitable care for preterm and sick infants.

Read the full project report here: XXX

The COVID-19 Pandemic Impacts NICUs around the World

The COVID-19 pandemic creates exceptional challenges, especially for the care of preterm, sick, and low birth-weight infants. While most restrictions are necessary to stem virus transmission, some impact the provision of healthcare, including infant- and family-centered developmental care (IFCDC). Hospitalized newborns, together with their families, are severely affected by separation policies, leading to unforeseen short- and long-term consequences.

To record families’ experiences regarding disruptions and restrictions of IFCDC during the first year of the COVID-19 pandemic, GLANCE and EFCNI launch a global online survey. This survey collects experiences related to prenatal care, parental access to babies during hospital stays, infant nutrition, breastfeeding, health communication, and mental health. Many partner parent and patient organizations within EFCNI’s network help translate the survey and gather responses. In the end, more than 2,100 parents from 56 countries participate in the survey and share their stories.

Thinking Globally: The Global Alliance for Newborn Care (GLANCE) Is Launched

EFCNI marks a pivotal milestone in its evolution with the official launch of GLANCE, the Global Alliance for Newborn Care. This global network brings together parent and patient representatives from all continents, united in their mission to improve the structural and organizational foundations of newborn care worldwide.

At its inception, GLANCE identifies key areas for global action, outlining its first campaigns and developing a comprehensive Call to Action. This powerful statement includes eight political demands aimed at advancing the care for babies born preterm, sick, or with low birth weight, and ensuring vital support for their families. Under the umbrella of EFCNI, GLANCE works to improve maternal and newborn health worldwide, even collaborating with the World Health Organization. A year later, GLANCE launches a global research project examining the effects of COVID-19 on infant- and family-centered developmental care. GLANCE reflects EFCNI’s commitment to global advocacy, setting the stage for future transformation.

Learn and Share for Better Care: The EFCNI Academy

The EFCNI Academy is an international education program for healthcare professionals, developed and organized by EFCNI. With input from the most experienced professionals in the field, the EFCNI Academy offers high-quality training and educational materials, ranging from workshops and seminars to factsheets and videos. Its mission is to educate and empower those caring for preterm and sick infants and their families to provide the highest standard of care.

Explore the EFCNI Academy materials and courses here: XXXX

The European Standards of Care for Newborn Health (ESCNH) Are Officially Launched and Published

The first 96 individual standards, organized into 11 topics in neonatal care, are officially launched and subsequently published in November during a parliamentary session in the European Parliament in Brussels, Belgium. EFCNI also publishes a Call to Action for Newborn Health, which can be accessed here: https://newborn-health-standards.org/implementation/call-to-action/.

Since then, EFCNI, along with its supporting medical societies and partner parent and patient organizations, has worked tirelessly to translate the ESCNH and accompanying materials into various European languages. The foundation also develops paths and tools for individual implementation in European countries. At the same time, existing standards are continuously revised according to a strict lifecycle protocol to ensure that they remain state of the art. Additionally, more standards are under development with the help of dedicated expert working groups to reflect the rapid pace of medical innovation. The ESCNH are available here: https://newborn-health-standards.org/.

The European Standards of Care for Newborn Health (ESCNH) Become a “Landmark”

The European Standards of Care for Newborn Health (ESCNH) have been awarded “Landmark” status by the federal program Germany – Land of Ideas. Initiated by the German government and industry federations, the program recognizes innovative projects and ideas that showcase the country’s pioneering spirit, creativity, and innovative forces. It honors projects that address pressing social or political issues in a forward-thinking manner.

For EFCNI, this award serves as a reminder that the foundation is capable of executing complex projects of this magnitude and driving progress through its network. It also provides higher visibility for maternal and newborn health as political issues.

More on the program here: https://land-der-ideen.de/en

The Public Takes Notice

After having become an Ashoka Fellow the previous year, Silke Mader is honored as Iconic Innovative Trailblazer of the Decade by the ALL Ladies League (ALL) in 2016. She also receives the Bavarian States Medal for Health and Care the same year. Even the prestigious medical journal The Lancet comments on EFCNI’s work and its formidable Chairwoman and lauds the foundation as best-practice example in an editorial.

For EFCNI, these recognitions signify that the foundation has become an established and influential voice for preterm and sick infants and their families. The foundation’s advocacy work has been impactful, raising awareness across Europe and driving change. Access the article here.

Participating in International Research

For the first time, EFCNI is invited to join an international, EU-funded research project and is honored to lead an entire work package, working to include patient perspectives and families’ experiences in the research process. The foundation is also in charge of disseminating updates and results and proceeds to develop a social media campaign and informative materials. What is more, EFCNI taps into its vast network of parent and patient organizations to set up an Advisory Board with 16 parent representatives, ensuring regular personal contact between them and the research teams.

The Screening to improve Health In very Preterm InfantS in Europe (SHIPS) project studies the effectiveness of follow-up programs and uses these results to develop guidelines for effective follow-up care. The overall aim is to improve the health and quality of life of children born very preterm.

Participating in the SHIPS study marks another important milestone for EFCNI as it becomes a valued partner and coordinator in complex research projects. This involvement demonstrates how including parent and patient voices provides a fuller picture and adds valuable insights, aiding in the more comprehensive analysis of complex research questions. It also signals that EFCNI can work according to the highest scientific standards. EFCNI will participate in an increasing number of research projects in the coming years and eventually establish and conduct its own while eventually releasing its own position paper on how to include parents and families in research.

Joining Science, Research, and the Patient Voice: The First jENS Congress Takes Place in Budapest, Hungary

In 2015, EFCNI joins forces with the European Society for Pediatric Research (ESPR) and the Union of European Neonatal and Perinatal Societies (UENPS) to host a unique medical congress: the Congress of joint European Neonatal Societies, abbreviated as jENS!

It is the first international neonatology congress where medical societies, scientists, healthcare professionals, and parent and patient representatives contribute equally to the program, fostering equal footing and mutual respect. The congress covers a wide range of important topics in neonatology, including neurology, cardiology, pulmonology, infectious diseases, nutrition, epidemiology, nursing, and family-centered care. Pre-congress courses, workshops, prizes and scholarships for young researchers, and a session on women and diversity in neonatology are also part of the program.

Since its launch in Budapest, Hungary, the jENS has taken place every two years in a different major European city. It has grown into an important congress in neonatology, attracting around 1,500 to 2,500 attendees from all over the world.

For EFCNI, organizing a medical congress of this scale is not only a great honor but also a testament to the foundation’s standing in the medical community as respected partner and patient voice. It also demonstrates its expertise and interconnectedness within neonatal communities across Europe.

A New Tradition: The EFCNI Awards

During the Parent Organizations Summit of 2014, EFCNI begins a new tradition: The EFCNI Awards! The award recognizes three parent and patient organizations in its network who impressed the jury with their outstanding efforts, activities, and achievements in the fields of maternal and newborn health. The award ceremony has since become a popular tradition at each Parent Organizations Summit.

Development of the European Standards of Care for Newborn Health (ESCNH) Begins

The European Standards of Care for Newborn Health (ESCNH) are an interdisciplinary European collaboration aimed at developing and updating standards of care for key topics in newborn health. These standards focus on the treatment and care of preterm and sick babies from hospital to school age and serve as a reference for creating binding national guidelines, protocols, and laws. More than 220 healthcare professionals, parent and patient representatives, and selected industry specialists from over 30 countries contributed to the development of the individual standards that comprise the ESCNH. Existing standards are regularly reviewed to ensure accuracy; new standards are developed to meet the needs of an ever-evolving, complex medical landscape.

Differences in education, training, treatment, and care exist not only between nations but also within regions and hospitals. With the ESCNH, the foundation wants to address these disparities in neonatal health across Europe and bridge gaps in neonatal care. The ESCNH envision a world where all babies receive equitable access to evidence-based care and current best-practice treatment, regardless of where in Europe they are born.

The project to develop the ESCNH officially starts in April 2014 with an art exhibition in the European Parliament (EP). The Vice President of the EP attends and, together with 80 parent, patient, and healthcare representatives, signs a large poster to express support. For EFCNI, developing the ESCNH showcases the foundation’s ability to lead, expertise in maternal and neonatal health, and the strength of its network of partners and supporters. Professor Angelika Niebler, MEP, and Dr. Peter Liese, MEP, support the project from the start, just like all major neonatal, perinatal, and pediatric societies in Europe. Thank you for all the support since then!

Learn more about the ESCNH here: https://newborn-health-standards.org/

Public Recognition Grows

EFCNI’s Chairwoman Silke Mader receives the Prix Courage and the Medal for Particular Services to Bavaria in a United Europe, recognizing her tireless work on behalf of preterm and sick infants in Europe. These awards also validate EFCNI’s mission to improve maternal and neonatal care in Europe and acknowledge the impact of the foundation’s advocacy and network.

Call to Action for Newborn Health

In November of the same year, EFCNI joins forces with the parent and patient organizations in its network to launch the Call to Action for Newborn Health in the European Parliament. The Call to Action invites policymakers, parent and patient organizations, healthcare professionals, academics, industry, and the public to join forces to ensure the best start in life for every baby born in Europe. Parent and patient organizations in EFCNI’s network promote translated versions in their countries, often succeeding in catching the attention of politicians and policy makers.

Browse the Call to Action here:

Caring for Tomorrow

EFCNI publishes the White Paper Caring for Tomorrow on the need for well-organized, effective, and targeted preconception, maternal, and newborn care to improve health outcomes for preterm and sick infants and their families. It also emphasizes the need for long-term follow-up care.

The White Paper contains 13 key recommendations as a step-by-step path to improving maternal and neonatal care in Europe in lasting ways. In compiling the paper, EFCNI collaborates with policymakers on both the national and EU levels, forming strong bonds and furthering the foundation’s expertise in advocating for preterm infants and their families. All agree that there is a pressing need for universal, European-wide standards in neonatal care.

Peruse the White Paper here: 

Too little, too late?

EFCNI publishes the EU Benchmarking Report Too little, too late? Why Europe should do more for preterm infants. It details the impact of preterm births across 14 European countries and highlights how maternal and newborn health are regularly neglected in European politics. The report thus calls on the European Union to recognize preterm birth as health and social challenge, invest in prevention programs, and push for the development of policies to improve the quality of care for preterm and sick infants well into adulthood. The report also highlights a troubling lack of European-wide standards of care for newborn health.

In many European countries, the report sparks a national debate about how to improve the quality of maternal and newborn care, often leading to concrete policy changes and improved regulations. In Austria and Germany, for example, new regulations on in-vitro fertilization (IVF) are developed. Parent and patient organizations in Ireland, in turn, use the report as impetus to collect more data on how preterm birth affects the country. The Benchmarking Report thus positions EFCNI firmly within the neonatal community and amplifies the foundation’s voice and impact.

Read the Benchmarking Report here:

17 November: The First World Prematurity Day Is Celebrated

During the first Parent Organizations Summit a year earlier, participants selected 17 November as a day to raise awareness for the challenges associated with preterm birth. It is the birthday of Jürgen Popp’s daughter, born late preterm but healthy, after the family had experienced the harrowing loss of triplets born too soon. To the Summit participants, this particular birth on 17 November signaled hope and joy while also honoring previous hardships and loss.

Since then, the annual celebrations of World Prematurity Day have grown bigger and more widespread each year. International organizations LittleBigSouls (Africa), March of Dimes (USA), and National Premmie Foundation (Australia) soon join, making the day a truly intercontinental affair. Supranational organizations like the WHO, UNICEF, and Save the Children participate as well. In recent years, participants from more than 100 countries have joined forces with online and offline activism, special events, and creative activities to raise awareness for preterm birth and advocate for better care.

First Congress on Preterm Birth in Berlin, Germany

To engage medical professionals and policymakers as well as amplify the perspective of affected families, EFCNI organizes and hosts its very first congress on preterm birth in Berlin, Germany.

This congress marks a starting point for EFCNI’s continued involvement in research, policy, and advocacy while also arguing for the importance of including the voices of patients and their families in medical and political conversations.

The Declaration of Rome

The ten demands summarize the needs of preterm and sick infants, calling for better care, increased research, and more funding to improve health outcomes and push for political change.

Work on The Declaration of Rome already began during the First Parent Organizations Summit in Rome, Italy, the previous year. Once finalized, EFCNI’s Chairwoman Silke Mader presents the ten demands for preterm infants and their families to politicians of the European Parliament. MEP Professor Angelika Niebler becomes a supporter and patron of EFCNI in response.

The Declaration is not only one of the first documents EFCNI writes and prints itself; it also establishes the foundation as a voice for preterm and sick infants.

View the Declaration here:

First Parent Organizations Meeting in Rome, Italy

At EFCNI’s invitation, 25 parent representatives from 14 organizations meet in Rome to define the aims and objectives underlying their advocacy work. The meeting is a success, connecting advocates from various countries across Europe and enabling them to trade experiences, skills, and ideas. Together, the group drafts their key demands for preterm health, later to be published as The Declaration of Rome. The group also designates 17 November as an annual international awareness day for preterm birth.

Since then, the meeting, eventually renamed the “Parent Organizations Summit,” has been held annually in Freising, Germany. Now, more than 70 parent and patient representatives from more than 45 organizations and 30 countries come together for a weekend filled with presentations, discussions, workshops, and talks.

For EFCNI, the “POS,” as the meeting is affectionately abbreviated, becomes a platform to share skills and knowledge, empowering parent and patient representatives to push for progress in their respective countries and local communities. The meetings also strengthen and expand the network of dedicated advocates.

The European Foundation for the Care of Newborn Infants (EFCNI) Is Founded

GFCNI’s precursor is founded by affected parent and activist Silke Mader, neonatologist Professor Matthias Keller, affected parent Jürgen Popp, and lawyer Thomas Föringer.

Seeing the need for systemic change across Europe, they envision an organization that will advocate for the needs and interests of those born preterm and their families. They also want to build a strong international network and empower families to participate in conversations on maternal and neonatal medicine and care. From the very beginning, national parent and patient organizations in Europe join forces under the umbrella of EFCNI to push for better treatment and care for those born too soon.

EFCNI is more than a self-help group; rather, it gives a voice to families with a preterm or sick baby. The foundation participates in medical, political, and socio-cultural discourses on maternal and newborn health and engages a diverse group of stakeholders, including medical professionals, policymakers, and industry partners.

How It All Began

Silke Mader, who will later co-found the European Foundation for the Care of Newborn Infants (EFCNI), is pregnant with twins. She and her husband are overjoyed and are eager to welcome their children. However, it is a difficult pregnancy, and Silke Mader develops HELLP (Hemolysis, Elevated Liver enzymes, and Low Platelet count), a severe form of pre-eclampsia that affects the blood and liver and that can be life-threatening if not treated promptly.

Diagnosed almost too late, Silke Mader is rushed to the hospital for emergency care. Her twins need to be delivered at 25 weeks of gestation. On 17 February 1997, Lena (290 g) and Lukas (515 g) are born and immediately admitted to the NICU. Tragically, Lena passes away after 6 days. Against all odds, Lukas begins to improve and can eventually be transferred to the local neonatal unit. During their hospital stay, the Maders receive minimal information about their children’s condition, development, and treatment options. Despite the medical staff’s efforts to save Lena and Lukas, they fail to involve the parents in crucial decisions and care routines, leaving the Maders feeling helpless and powerless.

Once the family is finally discharged home, the medical challenges continue. Lukas, having been born extremely preterm, requires continued treatment and support, but his health issues are often not accurately diagnosed, delaying appropriate care. The family struggles with the lack of emotional, psychological, economic, and medical support. Resilient and relying on each other, they quickly educate themselves on medical matters and grow into strong advocates for their son and his needs, often fighting a rigid healthcare system that sees parents as burdens rather than assets.

Eventually, Silke Mader channels her experiences and energy into a local, Munich-based parent support group, which she begins chairing in 2001. In 2003, she becomes Chairwoman of the German umbrella organization “Das frühgeborene Kind e.V.” (“The preterm child”). She soon realizes that the challenges faced by families with preterm or sick children are similar across Europe, highlighting the need for organized advocacy on a European level. In 2008, this need leads to the foundation of EFCNI, the European Foundation for the Care of Newborn Infants, with Silke Mader at the helm.