Challenge:
There is a lack of patient/family engagement in research. Therefore, while PFD research has increased in recent years, it often doesn’t reflect the needs and perspectives of those affected by PFD.

Solution:
Establish the Family-Centered PFD Research Consortium to serve as a meaningful collaboration between patient and family stakeholders, researchers, and clinicians in the field of PFD.

Empower and prepare families to actively partner in research, enabling them to contribute their unique perspectives to grow the PFD research field.

By placing patient and family stakeholders at the research table and equipping them with the necessary skills, knowledge, and resources, the Consortium will bridge the existing gaps in PFD research building capacity for future research.

Long-term Vision:
As a beacon of family inclusion, the Consortium will serve as a model for advancing PFD research, ensuring that families remain at the center of the research process, going beyond being mere subjects of the study. This family-led approach will contribute to the meaningful and sustainable advancement of knowledge, leading to improved outcomes and care for children and families affected by PFD.

Consortium Goal:
We aim to create a space where the voices of parents of children with PFD and adults with PFD themselves are central to the research process. By forming a consortium, we aim to build capacity for PFD research to ensure that it truly reflects the experiences of those living with PFD.