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: https://t.co/fM2RuaJz0c

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:

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:

Our Mental Health intern, Vy Quynh Vu shined a light on the connection between mental health and the rare disease journey. Her work reminds us that advocacy is about the whole person, their well-being, and their resilience. Watch the recording:

Kim Nguyen, E.WE Foundation intern presented her final project: Biotech Funding and Social Media Management highlighting how competitive and challenging nonprofit funding can be and the vital role of social media messaging. Watch the recording:

Trisomy 18 is often identified through prenatal testing—making it essential that clear, accessible, and accurate information is available. Jaimie Lopez-Alvarez, E.WE intern, presented: Prenatal Testing: A Health Equity Project. Watch the recording:

In 2024, we hosted a Health Equity Community Workshop to educate, engage, and empower participants on the importance of health equity and rare diseases. The workshop was spearheaded by Vivian Duong, 2023 E.WE Foundation summer intern. Watch the recording:

From the U.S. Capitol to our local communities - advocacy never stops! Learn about our policy priorities https://t.co/bKBnx3nnLP

At The E.WE Foundation, we show up for families, for advocates, and for change. We are grateful for partnerships that strengthen us, collaborations that inspire us, and volunteers who give so generously of their time and talents. Together, we're amplifying rare disease voices!

Yesterday was National Patient Advocacy Day — and we missed posting about it because we are in the thick of advocacy right now. The calendar marked yesterday, but we celebrate showing up today and every day after! Happy National Patient Advocacy Day, late! ✌🏾

The recording from our 2025 LEAP into Advocacy Virtual Summit is now available. Check it out here:

What is Trisomy 18? Also called Edwards Syndrome, this rare genetic condition is caused by an extra copy of chromosome 18 and can lead to serious health challenges and death. There are 3 types: full, mosaic, and partial. Learn more about our efforts https://t.co/P88alwAY9k.

Hope is advocacy in action. Every step forward—no matter how small—brings us closer together. Here’s proof of hope in real time… and a little hug to go with it. 💙 Happy Sunday! *Elijah is an 8 year old 3rd grader, living with full trisomy 18.

The E.WE Foundation is a global healthcare advocacy organization supporting families affected by Trisomy 18 and other rare diseases. Check out our website to learn more https://t.co/P88alwAY9k

We partnered with SOFT UK for their 2022 Family Weekend! They asked us to share how Elijah's diagnosis has impacted our family. In this video, you'll hear from the entire Edwards crew as we share our journey of life, love and hope! Watch it here:

Throwback Thursday! As we wrap up #RareAcrossAmerica, we wanted to highlight this Advocacy and the Legislative Landscape session from our 2022 LEAP into Advocacy Virtual Summit. Tune in to explore how your story can influence policy and health decisions.

We're wrapping up two weeks of conversations with Alabama lawmakers, sharing legislation that can create better health outcomes for families affected by rare conditions. Thank you @SenTuberville @SenKatieBritt @RepDaleStrong for meeting with us. @EveryLifeOrg

📢 NEWLY RELEASED: The American Academy of Pediatrics has published new clinical guidance for caring for infants and children with Trisomy 13 and Trisomy 18. Read the full guidance here: https://t.co/D4gIkZsnrW #TrisomyAwareness #RareDisease #Trisomy13 #Trisomy18 #EWEFoundation