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About The E.WE Foundation

The E.WE Foundation is a global healthcare advocacy organization dedicated to improving the lives of individuals and families impacted by rare diseases, with a hyperfocus on Trisomy 18 (Edwards Syndrome). Our mission is to provide resources and support to families impacted by rare diseases like Trisomy 18, while changing the medical perspective through advocacy, education, and public policy. Through its core programs, LEAP, ZEBRA, and STRIPE, the E.WE Foundation is committed to health literacy and community education, comfort care and mental health, and to providing economic assistance to Trisomy 18 families experiencing financial hardship. The E.WE Foundation works collaboratively with nonprofit organizations, school systems, and state agencies across the country to advance rare disease awareness, education, and legislation. The organization is also committed to empowering diverse voices within the rare disease community to advance health system advocacy, research, and public policy initiatives. Through its work, the E.WE Foundation continues to make a profound impact, ensuring that every individual affected by a rare disease receives the care, support, and recognition they deserve. The E.WE Foundation was founded by Kareem & Sarita Edwards, parents to Elijah who was diagnosed in utero with a rare genetic condition called Trisomy 18 (Edwards Syndrome).

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