Global healthcare advocacy network for families affected by Trisomy 18 (Edwards Syndrome) and other rare and complex medical conditions.
Joined March 2019
- Tweets 903
- Following 215
- Followers 274
- Likes 673
409 Photos and videos
⏰ The countdown is on! Only 23 Days Until LEAP Summit 2026! Join participants from around the world for the 2026 LEAP into Advocacy Summit. LEAP offers a unique opportunity to learn, connect, and drive meaningful change.
🔗 Register today: theewefoundation.org/leapsum…
24
New Learning Module Available! Mental health is an essential part of every care journey. As we wrap up mental health month, we're proud to share our latest self-guided learning module: Mental Health in the Rare Disease Community. Access the module here: youtu.be/s056vRtDRrI?si=5dVP…
10
The E.WE Foundation had the opportunity to participate in the Annual North Alabama Health & Wellness Fair at Calhoun Community College! Thank you to the organizers, sponsors, volunteers, and everyone who stopped by our table to learn more about the work we do!
8
Mental health support shouldn’t be a privilege but for many families living with rare and complex conditions, access to care remains out of reach. We believe in creating spaces, resources, and conversations because mental health matters for every diagnosis, caregiver, and family.
7
Mental wellness starts with small actions that create meaningful impact. We invite you to take simple steps to support mental health.
âś” Learn
âś” Share
âś” Start a conversation
âś” Check on a caregiver
Mental health matters at every stage of the journey. theewefoundation.org/mentalh…
10
Living with a rare or medically complex diagnosis can impact the entire family emotionally, mentally, and physically. Too often, those struggles go unseen. That’s why we created our Mental Health Resource Center. Visit theewefoundation.org/mentalh… to learn more.
#MentalHealthMatters
1
4
Caregivers carry more than schedules and medications. And often… they carry it silently. If you’re a caregiver—your mental health matters too. You deserve support, space to breathe, and care that includes you. Explore our efforts: theewefoundation.org/zebra
#CaregiverSupport
15
Mental health matters. For individuals and families with rare or medically complex conditions, the emotional impact is real, and often invisible. This May, we’re raising awareness, sharing resources, and holding space for the rare community. Learn more theewefoundation.org/mentalh…
7
Join us for the 2026 LEAP into Advocacy Summit! This year’s theme: Transforming Knowledge and Innovation Into Real-World Impact. This event is approved for 6 CEs.
đź“… June 25, 2026
đź“Ť In-person at the University of Alabama in Huntsville Virtual
Register: theewefoundation.org/registe…
32
Every child deserves to feel safe. But each year, at least 1 in 7 children experience abuse or neglect—and some are at even greater risk. In just 6 minutes, you can become part of the solution. Access our short, self-paced learning module here: youtu.be/DWCaMyMnuLk
3
Child abuse and neglect are more common than many realize—but prevention starts with awareness. Every child deserves to feel safe, seen, and supported. Learn the signs. Share the message. Be part of prevention.
theewefoundation.org/abusepr…
9
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!
40
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.
1
23
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
13
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!
1
16
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.
18
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
27
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!
27
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!
38
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.
1
32