The E.WE (/ē/·/wē/) Foundation is an IRS approved 501(c)(3) healthcare advocacy organization established to support families affected by Edwards Syndrome, commonly known as Trisomy 18.
WHAT IS EDWARDS SYNDROME?
Edwards Syndrome, commonly known as Trisomy 18, is 1 of more than 7,000 rare diseases affecting 1 in 5,000 births. Trisomy 18 is a genetic chromosome abnormality caused by an error in cell division. When this happens, instead of the normal chromosome pair, an extra chromosome 18 results. Due to several life-threatening medical problems, many individuals with Trisomy 18 die before birth or within their first month.
Though the U.S. has seen tremendous progress in the fight against COVID-19, there are still causes for concern in the rare disease community. Emerging data shows COVID-19 vaccines may be less effective for people with some immune compromising conditions. Patients and caregivers with questions about the COVID-19 vaccine, new mask guidance or other best practices to stay safe, are urged to talk to their health care team, particularly if they have received a solid-organ transplant, have immunocompromising conditions, or are taking immunosuppressive medications.
Elijah Wayne Edwards, Full Trisomy 18. Elijah was born March 28, 2017. He is 4 years old.
The E.WE Foundation is an approved Continuing Education Provider.
LEAP is an instructional resource program promoting health literacy, community education, patient advocacy, and public policy.
ZEBRA is a comfort care program offering support and end-of-life solutions to families living with medical complexities, rare disorders, and disability.
STRIPE is an economic assistance program designed to help with the financial burden associated with caring for individuals living with Trisomy 18.
We welcome organizational partnerships, community collaborations, and civic engagement opportunities. Contact us to discuss partnering possibilities. Interested in volunteering? Sign up to be added to our volunteer’s list.
JOIN OUR COMMUNITY!
Stay connected by joining our mailing list. We will never spam you. We respect your privacy.
By submitting your email address, you agree to receive email correspondence from The E.WE Foundation.