The Parent and Patient Organizations Summit

Day 2 of the GFCNI Parent and Patient Organizations Summit (POS) 2026 offered a rich and engaging program, highlighting the importance of collaboration across the neonatal care ecosystem and the need for trauma-informed, family-centered approaches.

The day’s presentations focused on the often-overlooked role of trauma in the neonatal journey – affecting not only preterm and sick newborns, but also their parents and the healthcare professionals who care for them. Speakers explored how early medical experiences can shape long-term outcomes, including challenges such as feeding tube dependency, as well as the lasting emotional impact of the NICU experience on families and care teams.

Dr. Markus Wilken (Feeding Tube Dependency Institute, Germany) provided valuable insights into pediatric medical traumatic stress and approaches to overcoming feeding-related challenges. His session emphasized the importance of recognizing trauma early and addressing it through targeted, interdisciplinary support.

Gigi Khonyongwa-Fernandez (Families Blossoming, USA/UK) highlighted the power of healing together by fostering stronger connections between parents and healthcare professionals. Her presentation underscored the importance of trauma-informed care throughout the neonatal journey and beyond, promoting more compassionate and effective support systems.

In the afternoon, participants engaged in a series of interactive workshops designed to equip parent and patient organizations with practical tools to strengthen their impact and sustainability.

Sessions covered key areas such as organizational development and growth, with a focus on building effective team structures and long-term strategies; the establishment and development of peer support services in the NICU; and the responsible use of artificial intelligence (AI) in advocacy, including tools like ChatGPT. Another workshop explored how to bridge gaps between science and policy, encouraging collaboration beyond traditional roles to drive meaningful change.

Across all sessions, a clear message emerged: advancing maternal and newborn health requires strong, sustained partnerships between parent organizations, healthcare professionals, researchers, and policymakers.

Day 2 reinforced the Summit’s core purpose – turning knowledge into action and strengthening a global community dedicated to improving outcomes for babies and their families.

The final day of the GFCNI Parent and Patient Organizations Summit (POS) 2026 highlighted one of the most powerful aspects of the global advocacy community: peer-to-peer learning and collaboration.

During the Peer-to-Peer Learning Experiences session, parent organizations from around the world shared impactful initiatives, demonstrating how lived experience, advocacy, and innovation can drive meaningful improvements in maternal and newborn health.

The Coalition for Preemies Foundation (Poland) presented its extensive work on RSV prevention, reaching more than 30,000 preterm infants to date. Through strong political advocacy, including national campaigns, policy engagement, and the establishment of the Coalition for the Prevention of RSV Infections, the organization has helped expand access to preventive measures. Notably, reimbursement for RSV vaccination during pregnancy has been introduced, with uptake already reaching significant levels. Their next goal is to ensure protection for all children under two years of age.

Som Prematurs (Spain) introduced the AEFNUN project, a collaborative research initiative with leading universities to evaluate the impact of structured peer support programs in neonatal intensive care units (NICUs). Implemented across 15 hospitals, the project assesses outcomes such as parental stress, mental health, and quality of life, as well as healthcare professional feedback. By combining rigorous research with lived experience, the program offers a scalable model for family-centered neonatal support.

From Ukraine, Early Birds NGO shared a unique and deeply moving initiative using photography as a therapeutic, trauma-informed approach in NICUs. In a context shaped by war and ongoing disruptions to healthcare services, the project creates meaningful moments for families by documenting early parent–baby connections. These images serve as powerful tools for memory, identity, and healing, particularly in situations of loss, offering families a tangible recognition of their child’s life and their role as parents.

Finally, The Little Miracles Trust (New Zealand) presented the Carosika Collaborative, a national, community-driven initiative addressing inequities in preterm birth outcomes. By bringing together families, healthcare professionals, and advocates, the initiative focuses on improving care for underserved populations, particularly indigenous communities, and tackling systemic disparities in access to neonatal services.

These diverse projects underscored a shared commitment to improving outcomes for preterm and sick newborns and their families worldwide. At the same time, they highlighted the importance of collaboration across sectors, cultures, and lived experiences.

As POS 2026 came to a close, one message stood out clearly: meaningful change happens when we learn from one another, share our experiences, and work together to build stronger, more equitable systems of care.