RESEARCH AT THE E.WE FOUNDATION

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.

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

Families caring for children with Trisomy 18 face challenges that extend beyond the hospital. Navigating Trisomy 18: A Financial Burden Impact Report shares findings from The E.WE Foundation’s 2021 Financial Burden Impact Project conducted in partnership with Global Genes. Through the voices and experiences of families across the United States, this report highlights the emotional, medical, and financial realities of rare disease care, including out-of-pocket costs, insurance barriers, lost income, and long-term impacts on family well-being. These findings continue to guide our advocacy, support programs, research priorities, and efforts to advance more equitable systems of care.

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

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