Partnerships
Mama Bear Care
Mama Bear Care empowers women who have received a prenatal diagnosis to embrace their Mama Bear role, equipping them to advocate for their special babies with fierce love and tender care.
Extra To Love
Extra To Love aims to empower the Trisomy 13 and Trisomy 18 communities through connection, financial support and education.
Asher's Answer
Our organization provides modest financial support to cover medical equipment or travel expenses not otherwise covered by insurance. We also pay for specialized memorabilia such as engraved lockets, urns, etc., for those who lost their little ones.
E.WE Foundation
To provide resources and support to families affected by Edwards Syndrome/Trisomy 18, and other rare diseases, while changing the medical perspective through advocacy, education, and public policy.
Simon's Law
The mission of Simon's Law is to create national awareness and protection for medically endangered pediatric dependents with life-threatening diagnoses through education, accountability, parental rights legislation, and the Patients' Bill of Rights.
Simon's Kids
The mission of Simon's Kids is to seek and foster fair and equal access to life-saving medical treatment for pediatric dependents with life-threatening diagnoses by equipping and empowering parents/legal guardians, through education, advocacy, resources, and national awareness.
(TRIS)
The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase awareness and knowledge for families and professionals touched by rare trisomy conditions and aims to facilitate improved decision-making for optimal services and support for children and their families.
Our Role in the Trisomy Collaborative
The Trisomy Collaborative is a national, multi-institution effort working to improve care for children with Trisomy 13 and Trisomy 18. By bringing together clinicians, researchers, ethicists, and family advocacy organizations, the collaborative helps create more consistent, informed, and family-centered approaches to medical decision-making and long-term care.
This important work focuses on updating outdated narratives, expanding research, and equipping both providers and families with better tools, data, and communication strategies across the full spectrum of care.
The Edwards Syndrome Association is proud to be part of this collaborative. ESA helps bring the lived experiences of families into the conversation—ensuring that quality of life, real-world outcomes, and balanced, respectful counseling are considered as future care models, educational resources, and guidelines are developed.
Together, we are helping advance a more informed, compassionate, and family-centered approach to Trisomy 18 care.
