The E.WE Foundation

  • Home
  • The E.WE Foundation

The E.WE Foundation Global healthcare advocacy organization for families with Edwards Syndrome and other rare diseases The E.WE Foundation was founded by Kareem & Sarita Edwards.

The E.WE Foundation is an IRS approved 501(c)(3) healthcare advocacy organization providing resources and support to families affected by Edwards Syndrome, commonly known as Trisomy 18, and other rare diseases. Kareem & Sarita are parents to Elijah Wayne, a vibrant little boy, diagnosed in utero with Full Trisomy 18 along with an extensive list of other medical complexities. The E.WE Foundation is

committed to raising awareness about Edwards Syndrome and other rare diseases and to changing the medical perspective through efforts of advocacy, education, and public policy.

📢 NEWLY RELEASED: The American Academy of Pediatrics has published new clinical guidance for caring for infants and chil...
23/07/2025

📢 NEWLY RELEASED: The American Academy of Pediatrics has published new clinical guidance for caring for infants and children with Trisomy 13 and Trisomy 18.

This important step forward offers evidence-informed recommendations that emphasize compassionate, individualized care and shared decision-making between families and healthcare providers. Work like this affirms the value of continued progress in equitable, family-centered care.

The E.WE Foundation is committed to advancing advocacy, education, and policies that uplift the voices of families and ensures every child receives the care they deserve.

Read the full guidance here: https://publications.aap.org/pediatrics/article/doi/10.1542/peds.2025-072719/202649/Guidance-for-Caring-for-Infants-and-Children-With?autologincheck=redirected

There's still time to register! Our LEAP into Advocacy Virtual Summit is happening tomorrow, Thursday, June 26, 10 am CS...
26/06/2025

There's still time to register! Our LEAP into Advocacy Virtual Summit is happening tomorrow, Thursday, June 26, 10 am CST. Hear from experts on advocacy, maternal and child health, and mental health. Learn more about each session and register: theewefoundation.org/leapsummit

We're one week away from the LEAP into Advocacy Virtual Summit! Join us on Thursday, June 26, 10AM CST to hear from expe...
19/06/2025

We're one week away from the LEAP into Advocacy Virtual Summit! Join us on Thursday, June 26, 10AM CST to hear from experts on:

- Leveraging Data to Drive Impact: Using Stories to Shape Policy
- Advocacy 101: Navigating the Legislative Process for Rare Disease Policy
- Centering Mothers: The Overlooked Impact of Maternal Health
- Breaking the Silence: The Impacts of Mental Health on Patients and Their Families

Learn more & register: theewefoundation.org/leapsummit

This event is approved for 2 CEUs.

Registration is NOW OPEN!Join us for the 2025 LEAP into Advocacy Virtual Summit🗓️ Thursday, June 26, 2025🕙 10:00 AM CST💻...
13/06/2025

Registration is NOW OPEN!
Join us for the 2025 LEAP into Advocacy Virtual Summit
🗓️ Thursday, June 26, 2025
đź•™ 10:00 AM CST
đź’» Free | Virtual | CEUs Available

This year’s theme — Innovation & Collaboration: Leveraging Data to Transform Rare Disease Advocacy — brings together experts, professionals, and changemakers for a powerful day of learning and action.

Save your spot by registering today: https://us06web.zoom.us/webinar/register/WN_sweY1-VNTL6uB7wmbIlYBw

Learn more theewefoundation.org/leapsummit

Congratulations to Sarita Edwards for receiving the Morgan's Heart of Gold 2025 Excellence in Caregiving Award! The Exce...
18/05/2025

Congratulations to Sarita Edwards for receiving the Morgan's Heart of Gold 2025 Excellence in Caregiving Award!

The Excellence in Caregiving Award recognizes individuals who go above and beyond the call of duty in providing care for individuals with disabilities. Each year, individuals from around the world are celebrated for their dedication to the disability community.

Congratulations, Sarita!

Learn more about Morgan’s Hearts of Gold awards: https://morgans.org/hearts-of-gold-awards


https://youtu.be/SVAvMzLgZBg?si=XKBdNriPKDtcDoIl

The Excellence in Caregiving Award recognizes individuals who go above and beyond the call of duty in providing care for individuals with special needs — whe...

New Episode Alert! Tune in NOW to the Being Rare Podcast as we discuss the groundbreaking health equity report with Jeni...
24/04/2025

New Episode Alert! Tune in NOW to the Being Rare Podcast as we discuss the groundbreaking health equity report with Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition™ (RDDC™). This report was conducted in partnership with the National Organization for Rare Disorders, Inc. (NORD).

Watch the live recording on YouTube https://youtu.be/M_grFJvCLfw, or listen in wherever you stream your podcasts!

www.theewefoundation.org/podcast

In this episode, Sarita is joined by Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition (RDDC), to discuss the Inequities in the Rar...

Tune in to the Being Rare Podcast today at 2:00pm CST. We're sitting down with Jenifer Waldrop, Executive Director of th...
24/04/2025

Tune in to the Being Rare Podcast today at 2:00pm CST. We're sitting down with Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition, RDDC to discuss the Inequities in the Rare Disease Community Report. Watch the premier on YouTube or tune in wherever you stream your podcasts!

www.theewefoundation.org/podcast

Tune in the next episode of the Being Rare Podcast! We're joined by Jenifer Waldrop, Executive Director of the Rare Dise...
10/04/2025

Tune in the next episode of the Being Rare Podcast! We're joined by Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition, RDDC to discuss the Inequities in the Rare Disease Community Report. The episode airs Thursday, April 24, 2:00pm CST.

Watch the video recording on YouTube or listen in wherever you stream your podcasts!

www.theewefoundation.org/podcast

Tonight, we joined the UAH College of Nursing in celebrating 50 years of nursing excellence and education at their Golde...
06/04/2025

Tonight, we joined the UAH College of Nursing in celebrating 50 years of nursing excellence and education at their Golden Gala.

The Golden Gala concludes a year-long celebration of events on campus and in the community, including groundwork to address critical healthcare challenges, focusing on chronic disease, veterans' health, mental and cognitive well-being, and maternal infant care.

The E.WE Foundation is proud to partner with the UAH College of Nursing on expanding the healthcare ecosystem, fostering collaboration in advancing patient care and advocacy.

April is National Minority Health Month!Did you know that racial and ethnic minorities face significant health dispariti...
04/04/2025

April is National Minority Health Month!
Did you know that racial and ethnic minorities face significant health disparities, including in rare disease care? This month, we’re raising awareness to highlight these inequities and emphasize the need for increased access to resources, education, and support for underserved communities.

Tune in to the next episode of the Being Rare Podcast, where we’ll discuss the Inequities in the Rare Disease Community Report with Jenifer Waldrop, Executive Director at the Rare Disease Diversity Coalition (RDDC).

The episode will air Thursday, April 24th, 2:00pm CST on YouTube and wherever you stream your podcasts!

The E.WE Foundation is grateful to be one of nine organizations to receive the MVP Madison Visionary Partners Community ...
31/03/2025

The E.WE Foundation is grateful to be one of nine organizations to receive the MVP Madison Visionary Partners Community Impact Grant!

This grant will support our Coffee Chats Respite Programs for parents and caregivers of children with medically complex diagnoses.

Madison Visionary Partners is pleased to announce it has awarded nine organizations grants totaling $15,000 during its second Community Impact Grant. The organizations are:
The E.WE Foundation
Fantasy Playhouse Children's Theater and Academy
HEALS, Inc.
Heart of the Valley YMCA
Huntsville-Madison County Library Foundation
Madison City Schools
Madison Greenway and Trails, Inc.
Rocket City Modern Quilt Guild
Still Serving Veterans

Read more about these projects on our blog at https://www.mvpmadison.org/post/2025-grant-recipients-announced

We are excited to announce that the findings from our Trisomy 18 Newborn Screening Research Project are now being shared...
18/03/2025

We are excited to announce that the findings from our Trisomy 18 Newborn Screening Research Project are now being shared through presentations and scientific poster!

Our study, "Parental Awareness and the Impact of High Mortality Diagnoses on Newborn Screening Education", highlights crucial insights into gaps in newborn screening education for rare conditions like Trisomy 18. The results are a vital step in advancing awareness, improving resources, and empowering families navigating complex diagnoses.

The full findings will be available for public review on our website soon.

Special acknowledgment to our research interns - Harlie Williams and Michael Yun for their dedication to this important work.

www.theewefoundation.org

Address


Opening Hours

Monday 09:00 - 17:00
Tuesday 09:00 - 17:00
Wednesday 09:00 - 17:00
Thursday 09:00 - 17:00
Friday 09:00 - 17:00

Website

Alerts

Be the first to know and let us send you an email when The E.WE Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to The E.WE Foundation:

Shortcuts

  • Address
  • Opening Hours
  • Alerts
  • Contact The Practice

  • Want your practice to be the top-listed Clinic?

Share

Everyone Is We

The E.WE Foundation is a 501(c)(3) nonprofit healthcare advocacy organization serving families affected by Trisomy 18, also known as Edwards Syndrome. Trisomy 18 is a rare, genetic, chromosome abnormality affecting 1 in 5,000 births annually. There is no cure for Trisomy 18 and statistically only about 5% to 10% of infants born with Trisomy 18 will live to see their first birthday.

The E.WE Foundation was co-founded by Kareem & Sarita Edwards in March of 2019. Kareem and Sarita (The Edwards) are parents to Elijah Wayne, a vibrant 2 year old, prenatally diagnosed with Full Trisomy 18; along with an extensive list of medical complexities. Understanding the challenges of caring for a critically ill child, The Edwards decided to launch a healthcare advocacy organization to better serve those affected by Trisomy 18. The E.WE Foundation is dedicated to changing the medical perspective surrounding Trisomy 18 by bringing a broader scope of awareness to this rare disease. Our efforts support rare disease advocacy, public policy, and education efforts; ensuring that all patients are afforded access to quality healthcare, despite a medical diagnosis.

With 20+ years of professional experience in Healthcare Administration and Operational Leadership; Business Operations and Management; Bachelor of Science Degrees in Health Science and Psychology, our mission is to support families affected by Trisomy 18 while changing the medical perspective through advocacy, education, and public policy.