The Parent and Patient Organizations Summit

Since 2008, the Parent and Patient Organizations Summit (POS) has been a cornerstone of GFCNI’s commitment to supporting and connecting patient and parent advocates worldwide. What began as a meeting of 25 parent representatives from 14 organizations in Rome has evolved into an annual global event, now hosted in Freising, Germany. The Summit brings together more than 70 representatives from over 45 organizations and 30 countries, offering a vibrant weekend of presentations, discussions, workshops, and networking.

The Summit is a platform for sharing knowledge and skills, empowering patient and parent representatives to drive progress in maternal and newborn health within their local communities. It also strengthens the global network of advocates working toward shared goals.

Since 2014, the event has featured the EFCNI Awards, renamed the GFCNI Awards from 2025. These prestigious awards celebrate three organizations each year for their outstanding achievements and impactful activities. The award ceremony has become a beloved tradition, highlighting the exceptional efforts within the GFCNI community.

Highlights from the Last POS

The Parent and Patient Organizations Summit 2025 was a powerful and uplifting gathering, uniting 71 participants from 45+ parent organizations across 34 countries. From Friday, April 25, to Sunday, April 27, advocates convened in Freising, Germany, to exchange knowledge, build skills, and collaborate on strategies to improve maternal and newborn health worldwide.

Through engaging presentations, meaningful discussions, and interactive workshops, participants deepened connections and shared innovative approaches — all driven by their shared commitment to advocacy, empowerment, and high-quality care for babies born too soon, too small, or too sick.

The first day of the Parent and Patient Organizations Summit 2025 opened with energy and purpose as participants gathered in Freising, Germany, to kick off a transformative weekend dedicated to newborn health advocacy and community empowerment.

Pre-Course Session: Building a National Parent Organization

The day began with an exclusive pre-course workshop led by GFCNI Chairwoman Silke Mader, tailored for participants just beginning their advocacy journeys. With passion and deep expertise, Silke shared strategies for building sustainable organizations — from winning hearts and minds to securing strategic partnerships. The session equipped attendees with practical tools to expand networks, raise awareness, and establish long-term impact in maternal and newborn care.

Welcome and Introduction

The official Summit opening followed, as GFCNI’s Board of Directors welcomed attendees with an overview of the Summit’s goals and GFCNI’s evolving global mission. The tone was set for a weekend focused on learning, collaboration, and community.

Empowering Parent Voices: Stories from the Field

In the afternoon, the spotlight turned to three powerful presentations from parent organizations leading change across Europe:

“The Road to Ithaka” – Elena Megalemou, Miracle Babies Association (Mora Thavmata), Cyprus
Elena shared the inspiring story of how a bold vision became reality: the creation of a state-of-the-art NICU in Nicosia, built over 10 years through relentless advocacy, community support, and love.
“From the Worst Fate to a Beautiful Profession” – Dina Hediger, Frühchen & Neokinder Schweiz, Switzerland
Dina recounted her personal journey from NICU mother to national advocate. Her work has expanded to include peer-to-peer family support, professional training, and policy influence — changing the landscape of preterm care in Switzerland.
“One Voice for Zero Separation” – Michel Collar & Laetitia van der Elst, Noah’s Ark, Belgium
Representing the Zero Separation Coalition, Michel and Laetitia shared how Belgian organizations — from grassroots groups like VVOC and Cokoen to midwifery schools and policymakers — joined forces to fight for continuous parental presence in NICUs, despite linguistic, regional, and institutional complexities. Together, they’re making sure every newborn gets the best start in life.

Saturday, April 26, at the Parent and Patient Organizations Summit 2025, was a day of reflection, learning, and powerful skill-building sessions. From deeply emotional stories to hands-on workshops, participants came together to explore new ways of supporting families, enhancing care, and strengthening advocacy around the world.

Supporting Parents Following the Loss of a Baby from a Multiple Pregnancy – The Butterfly Project

The morning began with a profoundly moving presentation by Professor Nicholas D. Embleton of Newcastle Hospitals NHS Foundation Trust and Newcastle University, United Kingdom.

Through the Butterfly Project, Professor Embleton introduced a simple yet transformative practice: placing a butterfly symbol on the incubator or cot of a baby whose sibling has passed away in a multiple pregnancy. This gentle marker invites compassionate communication and reminds staff and families alike to honor each life and loss.

The presentation highlighted how care is not only about survival, but also about empathy, connection, and recognition — especially in moments of heartbreak.

The Baby is Talking to Us – How Can We Read Their Signs?

Next, Monique Oude Reimer-van Kilsdonk, Advisor Patient Care in Neonatology at Erasmus MC, The Netherlands, delivered an insightful session on interpreting infant behavior through images and observation.

Her message was clear and powerful: "Every photo tells a story — let’s make sure it’s the baby’s."

She demonstrated how photography in the NICU can enhance developmental care, support parental bonding, and serve as a tool for both healing and clinical understanding. Participants learned how to recognize non-verbal signals from newborns and how to use those cues to guide compassionate, responsive care.

Afternoon Workshops: Skill-Building for Impact

In the afternoon, participants joined parallel workshops, each designed to equip parent and patient representatives with actionable skills to take back to their communities.

Leadership Workshop
Led by Gigi Khonyongwa-Fernandez (NICU Parent Network | Families Blossoming, USA/UK), this session supported emerging and established leaders in honing their advocacy voice and building influence.
From Policy to Protection: Preventing Newborn Infections Through Advocacy
GFCNI’s Teresa Primavesi Poggio and Ilona Trautmannsberger guided participants through the critical links between health policy, infection prevention, and public health engagement.
Budget Building for Impact: Equipping Patient Representatives to Secure Funding
In this workshop, Nicole Thiele (GFCNI) shared essential tools for financial planning, funding proposals, and building budget transparency to strengthen organizational impact.
Social Media: Discover Insights and Analytics of Your Campaigns
Led by Dr. Annika Brunck and Yvonne Willibald (GFCNI), this session focused on understanding platform metrics, tracking campaign performance, and crafting content strategies that resonate and grow reach.
Industry Fundraising and Negotiation
GFCNI’s Silke Mader and Aurelia Abenstein offered guidance on navigating partnerships with industry stakeholders, ethical fundraising, and negotiation skills that preserve integrity while securing support.

The final day of the Parent and Patient Organizations Summit 2025 brought powerful closure to a weekend of connection, learning, and global advocacy. On Sunday, April 27, the spotlight shifted to the voices of parent leaders themselves, with a dynamic peer-to-peer learning session showcasing innovative projects from around the world.

This interactive format gave participants the opportunity to exchange insights, challenges, and strategies, while exploring new ideas to advance maternal and newborn health in their local contexts.

Patient Navigator Training and Its Impact on Maternal and Child Health – ARNIS, Romania

Presented by Corina Croitoru and Luiza Mutu (ARNIS Romania), this initiative introduced a groundbreaking model in Romania: specially trained Patient Navigators who support families in NICUs. These trained specialists guide parents of premature or high-risk newborns through the complexities of the healthcare system, offering compassionate, informed support that enhances both care quality and parental confidence.

NeuBriC – Multidisciplinary Training Program for Neonatal Brain Care – Ilitominon, Greece

Dr. Eleni Vavouraki (Ilitominon) shared how Ilitominon is transforming NICU care in Greece with NeuBriC, a multidisciplinary training program based on European Standards of Care for Newborn Health. This innovative initiative prioritizes neurodevelopmentally supportive, trauma-informed, and family-centered care, empowering healthcare teams and improving outcomes for vulnerable newborns.

Encouraging Skin-to-Skin Practice – SOS Préma, France

Audrey Reynaud highlighted SOS Préma’s successful grassroots campaign to promote skin-to-skin care, also known as kangaroo care, across France. By leveraging public awareness, healthcare partnerships, and policy engagement, this initiative is helping more families experience the critical bonding and physiological benefits of skin-to-skin contact in the earliest days of life.

Nurturing Partnerships: The Power of Multisectoral Collaboration – AFPNC, Ghana

Selina Bentoom, from the African Foundation for Premature Babies and Neonatal Care (AFPNC), presented a compelling case for cross-sector collaboration. In Ghana, healthcare providers, parent representatives, community organizations, and government institutions are joining forces to address prematurity. This effort marks a vital step toward building a more equitable, accessible, and coordinated care system for newborns and families.

These four presentations reflected a shared truth: real progress begins when parents and professionals work together. From Eastern Europe to West Africa, and from grassroots movements to national training models, the projects demonstrated how education, advocacy, and collaboration can drive sustainable improvements in newborn care systems across the globe.

At POS 2025, GFCNI proudly presented the inaugural GFCNI Awards, celebrating outstanding parent and patient organizations driving impactful change in maternal and newborn health. This year’s three awardees exemplify dedication, innovation, and community-centered care.

Preterm Infant Parents Network Uganda was recognized for building a robust, grassroots support network for NICU families. Their work includes providing parent education, peer connection, and launching community-run businesses, such as a low-cost baby oatmeal initiative that empowers families both nutritionally and economically.

Noah’s Ark Belgium received the award for uniting parent organizations across the country and leading the Zero Separation movement, championing continuous parental presence in neonatal care settings.

Fundacja Koalicja dla Wcześniaka (Poland) was honored for its tireless advocacy for NICU families, pushing for policy reform and legal changes to secure the right to uninterrupted parental presence in hospitals across Poland.

Congratulations to All the Winners!

We extend our heartfelt congratulations to this year’s GFCNI Award winners. Your work is a shining example of what’s possible when compassion, determination, and community leadership come together. From empowering families on the ground in Uganda, to uniting voices for Zero Separation in Belgium and Poland, your efforts are changing lives and shaping the future of newborn care worldwide. We are proud to celebrate your achievements — and honored to walk alongside you in this global movement.