September is Newborn Screening Awareness Month
Newborn screening is a state public health service that reaches each of the nearly 4 million babies born in the United States each year. It ensures that all babies are screened for certain serious conditions at birth, and for those babies with the conditions, it allows doctors to start treatment before some of the harmful effects happen. Newborn screening is performed soon after the birth of your baby, and in most cases, while you are still in the hospital.
Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies. Join us for a variety of interactive and educational events, meet-ups, workshops and networking opportunities. Gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies you can implement immediately to accelerate change.
2021 RARE Patient Advocacy Summit virtual registration is now open!
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.
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 Edwards Syndrome.
STRIPE is an economic assistance program designed to help with the financial burden associated with rare medical complexities and specialized medical care.
We welcome organizational partnerships, community collaborations, and civic engagement opportunities. Contact us to discuss partnering possibilities. Get involved by volunteering for an upcoming event.
Do you have a Trisomy 18 or rare disease story? Share your story with us here. We love meeting other families!
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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, 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 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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