In partnership with Global Genes, the E.WE Foundation is conducting a financial advocacy research survey to assess the financial burden associated with a Trisomy 18 diagnosis. Our goal is to explore individualized financial concepts to identify whether access to financial advocacy resources and education can contribute to lower out of pocket expenses for families impacted by Trisomy 18. This is a funded project. Compensation for participation is available. Please direct all questions to our Project Management Team at email@example.com.
WHAT IS EDWARDS SYNDROME?
Edwards Syndrome, commonly known as Trisomy 18, is 1 of more than 7,000 rare diseases affecting 1 in 6,000 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 (Edwards Syndrome). Elijah was born March 28, 2017. He is 4 years old. Read Elijah’s blog.
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.
E.WE MERCHANDISE AVAILABLE!
100% of proceeds supports our mission of service to families living with Trisomy 18 and other rare disorders.
Meet Our Founders
Kareem & Sarita Edwards are parents to Elijah Wayne, a vibrant little boy prenatally diagnosed with Edwards Syndrome, Full Trisomy 18. They have 20+ years of professional experience in Business & Healthcare Management. Kareem is a Senior Manager for a Fortune 500 Logistics Company and serves as the foundation’s VP of Operations. Sarita, whose professional background is Healthcare Management, is a world’s top patient expert and serves as the foundation’s CEO & President. Kareem & Sarita are rare disease legislative advocates, members of multiple coalitions, and serve as community congress members providing advice and insight on urgent policy initiatives. Additionally, Sarita serves on the executive boards for other nonprofit & community organizations, participates in workgroups centered around diversity, equity, & inclusion, and is a member of advisory councils within the state and across the country. Kareem & Sarita hold Bachelor of Science Degrees in Psychology and Health Science respectively; and continuing education studies in effective parenting & childhood behavior, evidence-based public health practices, and nonprofit leadership. Kareem & Sarita have four other children, Jeffrey, Rian, Josiah, and Jeremiah.
Being Rare PODCAST
Being Rare is a community conversations platform bringing awareness and exposure to several different topics and how they relate to rare disease, special needs, and the disabled community. Join the conversation by following us wherever you listen to podcasts. Watch recorded episodes on our YouTube channel.
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