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.
The Parent and Patient Organizations Summit 2024 was an inspiring and empowering gathering, bringing together 72 participants from 47 parent organizations across 32 countries. From Friday, April 26, to Sunday, April 28, attendees convened in Freising, Germany, to exchange knowledge, share experiences, and collaborate on strategies to improve neonatal and maternal care.
Through presentations, discussions, and interactive workshops, participants explored innovative ideas and strengthened connections, united by their shared dedication to advocacy, support, and the advancement of care for newborns and families worldwide.
The day began with a pre-congress workshop led by Chairwoman Silke Mader, who provided expert guidance on fundraising and industry negotiation. Her insights set the stage for an engaging and thought-provoking afternoon.
Following a warm welcome from the Board of Directors, the afternoon opened with a compelling talk by Professor Sven Wellmann from University Children’s Hospital Regensburg (KUNO), Hospital St. Hedwig of the Order of St. John, University of Regensburg, Germany. He introduced the European School of Neonatology (ESN) master’s program, designed to equip medical professionals with the knowledge, skills, and attitudes needed to practice high-quality neonatal medicine tailored to local clinical settings. He emphasized the vital role of education in improving neonatal care, highlighting how investing in today’s doctors and nurses leads to long-term, sustainable improvements in neonatal healthcare.
The afternoon concluded with three inspiring presentations from partner parent organizations, each showcasing high-impact projects that have made a meaningful difference in their communities.
Hungary’s "Melletted a Helyem" ("Right(s) Beside You") introduced "PICAPP"
This innovative app, developed specifically for preterm families, provides essential information and tracking tools to help parents navigate the challenges of preterm birth. The app allows families to log their baby’s development, supporting both parents and healthcare professionals. By collecting and organizing critical data, PICAPP enables medical teams to access relevant patient information in one place, improving care coordination and supporting family-centered neonatal care.
Tanzania’s Doris Mollel Foundation launched "The Right Care"
This initiative, developed in collaboration with the Tanzanian government, has transformed preterm care across the country. The project expands healthcare access for preterm infants and their families, even in remote and rural areas, making a significant impact on reducing disparities in neonatal and maternal healthcare.
The second day of the Parent and Patient Organizations Summit 2024 opened with an insightful presentation by Dr. Nathalie Charpak, pediatrician and scientific coordinator of the Kangaroo Mother Care (KMC) Centers of Excellence in Colombia. In her talk, “Premature Baby, Premature Family: Where Does KMC Fit In?”, Dr. Charpak presented scientific evidence on the profound impact of KMC on long-term brain development. She encouraged parent organizations to advocate for early KMC adoption, emphasizing its critical role in improving health outcomes for preterm infants.
Following this, Professor Dieter Wolke from the University of Warwick (UK) presented his research, “Long-Term Development After Very Preterm Birth: Potential Resiliency Factors?”. His findings underscored the importance of early parental empowerment, collaboration, and training throughout a hospital stay. Special thanks to both presenters for their valuable contributions in advancing the professionalization of parent and patient organizations.
After a coffee break, the then-EFCNI team took the stage to share updates on the organization’s latest projects. The highlight of this session was Silke Mader’s official announcement of GFCNI’s global expansion. The audience responded with a standing ovation, as Silke delivered an emotional speech, expressing how this transition from a European entity to a worldwide network of parent organizations had been a long-held dream.
The afternoon featured five parallel workshops, led by parent organization members and GFCNI team members, each designed to empower parent advocates and strengthen their organizational impact. Participants selected workshops most relevant to their organization’s growth and mission.
Workshop 1: Why Your Volunteer Network is Essential and Empowering
Charlotte Bouvard, Audrey Reynauld, and Vincent Desdoit (SOS Préma, France) shared strategies for effectively managing and engaging over 125 volunteers across 85 local branches. Participants exchanged insights on volunteer recruitment, retention, and empowerment, reinforcing the critical role volunteers play in expanding impact.
Workshop 2: The European Standards of Care for Newborn Health (ESCNH)
Dr. Isabel Geiger (GFCNI) and Professor Luc Zimmermann guided attendees through the implementation of the ESCNH at the local level. The session was tailored to participants’ expertise levels, serving as a motivation to drive adoption of these evidence-based care standards in their home countries.
Workshop 3: Budget Preparation for Projects
Nicole Thiele (GFCNI) outlined the importance of detailed budget planning, ensuring that anticipated expenses align with project goals. She emphasized the need for ongoing budget review and adjustments, helping participants develop realistic and sustainable financial strategies.
Workshop 4: Raising Awareness via Social Media
Catherina Witte and Dr. Christina Tischer (GFCNI) led an interactive session on maximizing social media engagement within the GFCNI network. They covered storytelling techniques, audience engagement strategies, and the use of interactive features and shareable visuals to effectively amplify awareness and reach broader audiences.
Workshop 5: The Perfect Pitch – Presenting Your Business Ideas
Silke Mader and Aurelia Abenstein (GFCNI) focused on crafting compelling narratives for funding proposals, partnerships, and advocacy efforts. Participants learned to highlight their unique value propositions, ensuring their messages resonate with key stakeholders.
Following a day of education and collaboration, the evening concluded with a dinner party, providing a relaxed setting for participants to foster deeper connections, exchange ideas, and enjoy each other’s company.
Day Two of the Patient and Parent Organizations Summit 2024 reinforced the power of knowledge-sharing, collaboration, and advocacy, further strengthening the global commitment to improving neonatal and maternal care.
The final day of the Parent and Patient Organizations Summit 2024 began with presentations from parent organizations, reinforcing the value of peer-to-peer learning. Based on feedback from last year’s summit, we recognized the significant benefits of experience-sharing, so this year, we placed even greater emphasis on direct exchanges between parent organizations.
Spain: ConTacto Program by Alicia Flórez Garabito (APREM)
Alicia introduced the ConTacto Program, which has received recognition from various health organizations for its impact on preterm babies facing both medical and socio-economic challenges. These infants fall into the "double-risk" category, requiring extra support. The program improves quality of life by assisting families during hospitalization and after discharge.
Ukraine: Involving the Healthcare Network During a Crisis by Oleksandra Balyasna (Early Birds)
Oleksandra shared strategies for maintaining organizational focus, efficiency, and resilience during challenging circumstances, including war. Despite losing sponsorships following the war’s outbreak in February 2022, Early Birds continues its mission to support preterm babies and their families. The organization also remains active in hosting events and conferences, with some drawing over 1,000 participants.
USA: Purpose-Driven Innovation by Yamile Jackson (The Zaky)
Yamile’s moving presentation shared her personal journey, which began 23 years ago with her own pregnancy. Inspired by her son Zachary’s story, she founded The Zaky, dedicated to enhancing neonatal care through engineering excellence and best practices. She highlighted how aligning purpose with project development can drive transformational changes in NICU outcomes.
Uganda: Community-Based Follow-Up for Preterm Babies by Kateregga Bazilio (Preterm Infants Parents Network Uganda)
Kateregga introduced the Village Kangaroo Ambassador Model, which focuses on home-based follow-up care for preterm babies. The initiative developed a health education book and a comprehensive home care plan to support families. A key insight from the program was that celebrating the discharge of preterm babies from the NICU to the kangaroo room or home brings hope to parents still in the NICU.
A heartfelt thank you to all our presenters for sharing their stories, insights, and achievements - your contributions inspire us all!
The EFCNI (now GFCNI) Awards brought Day 1 to a memorable close, honoring outstanding achievements by partner parent and patient organizations over the past year. These awards recognize exceptional dedication, advocacy, and impact in improving neonatal and maternal health.
This year’s winners are:
Your commitment, dedication, and remarkable achievements in advancing neonatal and maternal health inspire us all. We are honored and grateful to have such passionate and driven parent organizations as part of our network!
GFCNI is the first global organization and network to unite patients, families, healthcare professionals,
medical staff, and scientists from different disciplines, fields,
and countries – all with the joint goal of advancing the health and quality of care for newborns and their families across the globe.
GFCNI is a non-profit organization established under German public law. Tax Reference Number: 143/235/22619
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