WHAT IS EDWARDS SYNDROME?
Edwards Syndrome is 1 of more than 7,000 rare diseases affecting 1 in 6,000 births. More commonly known as Trisomy 18, Edwards Syndrome is a genetic chromosome abnormality caused by an error in cell division. When this happens, instead of the normal 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.
COVID RESPONSE
For the millions of people living with a rare disease, the novel coronavirus disease, COVID-19, presents additional challenges. Access to medical care can be limited as healthcare providers seek alternative solutions for care delivery. For many, anxiety and stress have heightened creating new or prolonging existing issues. Older adults and people who have severe underlying medical conditions seem to be at higher risk for developing more serious complications from COVID-19 illness. Take a look at what we know about keeping you and your family safe.
Elijah Wayne Edwards, Full Trisomy 18 (Edwards Syndrome). Elijah was born March 28, 2017. He is 4 years old. Read Elijah’s blog.
PROGRAMS
LEAP is an educational resource program promoting health literacy, community education, and patient advocacy.
ZEBRA is an end-of-life solutions program providing support to families facing infant & child loss due to Edwards Syndrome.
STRIPE is a financial assistance program designed to help with out-of-pocket medical expenses due to the high cost associated with specialized medical care.
COMMUNITY
We welcome organizational partnerships, community collaborations, and volunteer opportunities. Contact us to discuss partnerships. Are you looking to give back? Submit a volunteer interest form to be contacted for opportunities.
NEW MERCHANDISE IS NOW AVAILABLE!
Meet Our Founders
Kareem & Sarita Edwards are parents to Elijah Wayne, a vibrant 3 year old prenatally diagnosed with Edwards Syndrome, Full Trisomy 18. They have 20+ years of professional experience in Healthcare Operations and Business Management. Kareem is a Senior Manager for a Fortune 500 Logistics Company. Sarita, whose background is Healthcare Operations, manages the day-to-day operations of the foundation. Kareem & Sarita serve on the executive boards for multiple nonprofit and community organizations. They are rare disease legislative advocates, members of multiple coalitions promoting health and medical equity, and community congress members providing advice and insight on urgent policy initiatives. They hold Bachelor of Science Degrees in Health Science and Psychology with continuing education studies in effective parenting, childhood behavior, rare disease advocacy, and evidence-based public health practices. Kareem & Sarita have four other children, Jeffrey, Rian, Josiah, and Jeremiah.
Being Rare ONLINE
Being Rare is a community conversations platform bringing awareness and exposure to several different topics and how they relate to rare disease and the special needs community. Join the conversation by following us wherever you listen to podcasts. Watch recorded episodes on our YouTube channel.
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