Why Do We Need a Parent Advisory Board in UPRISE?
Across the ExpoHealthNet project cluster, we are committed to ensuring that research outcomes lead to meaningful improvements in healthcare. Within this shared mission, the UPRISE project places a strong focus on integrating the experiences and perspectives of families affected by preterm birth. One essential component of this work is the creation of a Parent Advisory Board (PAB).
Why a Parent Advisory Board?
Parents play a central role in neonatal care and long-term follow-up. Their insights are essential for:
- Making research meaningful and relevant to real-life experiences.
- Ensuring communication materials are clear, accessible, and supportive.
- Helping translate scientific evidence into policies and clinical practice.
Who Is Involved?
The PAB will consist of four representatives from parent organizations with personal experience of preterm birth. The group will be coordinated and chaired by the Global Foundation for the Care of Newborn Infants (GFCNI), a consortium partner in UPRISE and a leading global voice for families of newborns who need specialized care.
About GFCNI
The Global Foundation for the Care of Newborn Infants (GFCNI) is the first international organization to unite parents, patient advocates, healthcare professionals, and researchers around the goal of improving newborn health worldwide. GFCNI works to ensure that every baby – especially those born too soon, too small, or too sick – receives the right care, at the right time, in the right place.
How the PAB Will Work
As an independent advisory body within UPRISE, the Parent Advisory Board will actively contribute to the project’s dissemination and engagement efforts by:
- Reviewing project materials (e.g., web content, reports, parent information) for clarity and relevance.
- Providing feedback on communication strategies to improve engagement with families, patient groups, and clinicians.
- Advising on how research insights can be integrated into public health policies and clinical guidelines.
When Will the PAB Be Active?
The PAB will begin its work early in the project cycle and remain engaged throughout the duration of UPRISE, offering ongoing perspectives that support the project’s outreach and impact goals.
Creating Impact Across the Cluster
By embedding parent voices at the heart of its communication activities, UPRISE – and by extension the ExpoHealthNet cluster – aims to bridge the gap between scientific research and everyday family needs. This collaborative model strengthens our shared mission: to ensure that neonatal research leads to better care, stronger policies, and healthier futures for babies and their families.
Learn more about the UPRISE project and the role of the Parent Advisory Board: UPRISE Parent Advisory Board (PAB) – Voice of Parents & Newborn Health — UPRISE