At The E.WE Foundation, research is more than data—it is a bridge between the lived experiences of families, the expertise of healthcare professionals, and the systems that shape rare disease care. By investing in research, we aim to deepen the understanding of Trisomy 18, improve outcomes for infants and children, and inform equitable solutions for families and the professionals who serve them.
Our research priorities include:
- Documenting the lived experiences of families navigating rare diagnoses
- Identifying gaps in care coordination and service delivery
- Supporting healthcare professionals with insights that improve family-centered practice
- Advancing policy and education to transform the rare disease landscape
Completed Projects
Parental Awareness and the Impact of High-Mortality Diagnoses on Newborn Screening Education
This study explores how families of children with Trisomy 18 experience newborn screening and diagnosis. We aim to:
- Assess understanding of newborn screening processes
- Identify disparities in access, education, and communication
- Inform future education for both families and providers
- Provide evidence to shape advocacy and public policy
📌 This project is part of our LEAP Internship Program and is led by student interns Harlie Williams and Michael Yun.
Financial Burden of Trisomy 18 Diagnoses
In partnership with Global Genes, this study examined out-of-pocket costs and financial stress experienced by families of children diagnosed with Trisomy 18. Key insights now guide our financial advocacy and the development of family support programs.
What’s Next?
The E.WE Foundation is committed to research that drives change and action. Our next steps include:
- Expanding collaborations with academic institutions and healthcare providers
- Building data to improve rare disease education and care coordination
- Creating opportunities for families and professionals to co-lead research efforts
- Publishing findings that inform both clinical practice and public policy
Contact us or join our mailing list to stay informed on research calls, upcoming opportunities, and published findings.
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