The E.WE Foundation

Save the Date! Our annual LEAP into Advocacy Summit is happening June 25 at the University of Alabama Huntsville and virtually! Join us in-person, June 24 for a networking meet and greet! Enjoy food, music, and conversation! Registration opens in April! We hope to see you there!

Trisomy 18 Awareness Day. Trisomy 18 is often defined by clinical language that tells families what won’t happen. We exist because families deserve more. Our work is rooted in advocacy, equity, and changing systems. Today we honor every child and family impacted by Trisomy 18.

What is Trisomy? Trisomy means an extra chromosome. Trisomy 18 happens when there’s an extra copy of chromosome 18. This alters development and medical needs, and life expectancy, but it doesn’t erase joy, growth, or connection. Learn more at theewefoundation.org! Image: WebMD

March is #TrisomyAwarenessMonth — a time to honor families, raise awareness, and shine a light on trisomy conditions. This month, we’ll share stories, resources, and moments that matter. Join us as we celebrate families and push for equitable care. Happy Trisomy Awareness Month!

Behind every diagnosis is a family seeking answers, a researcher pushing boundaries, and an advocate driving change. That’s why LEAP into Advocacy Summit 2026 matters. Join us June 25, at the University of Alabama in Huntsville and virtually. Save the date. Join the movement.

We spent Rare Disease Week in Washington, DC. We’re proud to stand alongside advocates, clinicians, researchers, and organizations from across the country, united by a shared commitment to improving care, access, and outcomes for people living with a rare disease. @SaritaEdwards

Save the Date! Join us for the LEAP into Advocacy Summit 2026 — a hybrid convening bringing together patients, families, advocates, students, professionals, and partners committed to turning knowledge into action. June 25, 2026, in person + virtual, registration opens soon!

Today is Rare Disease Day! At the E.WE Foundation, rare disease advocacy isn’t something we observe once a year—it’s the work we do every single day. Today, we honor every rare disease warrior, caregiver, advocate, and ally. Your voices matter. Happy Rare Disease Day!

Honored to attend the Dr. Martin Luther King Jr. Unity Breakfast, hosted by the Delta Theta Lambda Education Foundation of Alpha Phi Alpha Fraternity, Inc. at the Von Braun Center. Thank you Kris Bell from Bank Independent for the invite. Moments like these refuel the work ahead.

Birmingham & Central Alabama friends! The REACH Disability Resources Fair is happening on January 21, 2026, from 9:00 AM–3:00 PM at Patriot Park in Homewood. This is a free community event bringing together organizations from across Alabama. 🔗 Scan the flyer to register!

We were honored to participate in the North Alabama Education Luncheon, where A+ presented on the state of education in Alabama. As a member of the Every Child Alabama Coalition, we are grateful to stand alongside partners working to advance equitable education outcomes in AL.

"When you tell patient stories, you are letting patients set the tone ... [it] can influence whether people receive support, whether research gets funded and whether laws change,” Sarita Edwards of @EveryoneIsWe told journalists. nationalpress.org/topic/storytel…

When thinking about which organizations to support, we hope you'll consider The E.WE Foundation, a global healthcare advocacy network for families with rare conditions. Our year-end giving goal is to raise $25,000 by December 31. Donate today at zeffy.com/en-US/donation…

It’s that time of year again — when generosity turns into real, tangible support for families living with Trisomy 18 and other rare conditions. This year, we’re asking for your help to raise $25,000 by December 31. Learn more and give today: zeffy.com/en-US/donation…

The E.WE Foundation is proud to be part of Madison City Schools’ Mental Health Fair on Thursday, November 13 from 5–7 PM at Midtown Elementary School in Madison, AL. We’re one of many community resources sharing information, tools, and connections! Stop by our table to say hello!

Excited to speak at the 24th Annual Fall Social Work Conference hosted by the University of Alabama School of Social Work today on Best Practices in Advocacy for Medically Complex Families. I’m grateful for the opportunity to share space and elevate conversations!

Did you know? Newborn screening happens in the first 24–48 hours of life and checks for dozens of rare but serious conditions. But access isn’t equal — leaving some families in the dark. That’s why advocacy matters. Learn more about our efforts: theewefoundation.org/newbornscreeni…

September is Newborn Screening Awareness Month! Every baby deserves a healthy start—and newborn screening makes that possible. This month, we’ll be sharing stories, facts, and advocacy updates to shine a light on why NBS matters, especially for families impacted by rare diseases.

Our Research intern, Nisma Abdraman's final project explored to the possibilities of gene therapy for trisomy disorders. While gene therapy for trisomy disorders is in its early stages, Nisma’s work underscores its importance. Watch the recording: youtu.be/5oBUE55DCq8?si…

Our Advocacy intern, Harlie Williams, explored Newborn Screening Advocacy for her final project by creating a survey to identify gaps in access and education. We proud of Harlie’s passion to ensuring every baby gets a healthy start. Watch the recording: youtu.be/7ucwAsBDm8M?si…