The E.WE Foundation

10/10/2025

I had the pleasure of speaking at the 24th Annual Fall Social Work Conference hosted by the University of Alabama School of Social Work today on Centering the Rare Voice: Best Practices in Advocacy for Medically Complex Families.

This session introduced a family-centered framework for advocacy grounded in evidence-based practices, lived experience, and justice-focused leadership. Through data-driven insights and meaningful dialogue, participants explored strategies to build cross-sector partnerships that truly center the voices of medically fragile children and their caregivers.

I’m grateful for the opportunity to share space and elevate conversations that drive impact and equity for rare and medically complex communities.

09/04/2025

Did you know?

Newborn screening happens in the first 24–48 hours of life and checks for dozens of rare but serious conditions. Early detection can mean the difference between lifelong complications and lifesaving care.

But access isn’t equal — some conditions aren’t included in every state, leaving families in the dark. That’s why advocacy matters.

Learn more about our efforts: theewefoundation.org/newbornscreening

09/01/2025

September is Newborn Screening Awareness Month!

Every baby deserves a healthy start in life—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. Together, we can turn awareness into action.

08/29/2025

Our Research Intern, Nisma Abdraman, dedicated her final project to examining the possibilities of gene therapy for trisomy disorders, including Trisomy 18. Her research explored emerging science, current challenges, and the potential for innovative therapies to improve quality of life for individuals with rare genetic conditions. While gene therapy for trisomy disorders is still in its early stages, Nisma’s work underscores the importance of continued research, collaboration, and advocacy to bring hope to families worldwide.

Thank you Nisma for your commitment to advancing knowledge and keeping the rare disease community informed about what’s on the horizon. Watch the recording:

Research Intern, Fall 2023, Final Project Presentation

08/27/2025

Our Advocacy Intern, Harlie Williams, dedicated her final project to exploring Newborn Screening Advocacy—with a focus on creating a survey to identify gaps in access and education from a parental perspective.

Newborn screening is a critical step in detecting serious health conditions early, but not all families have equal access to information or resources. Harlie’s work emphasizes the importance of listening to parents’ voices to better understand barriers and improve outcomes for newborns—especially in the rare disease community.

We are proud of Harlie’s passion for bridging these gaps and for helping to ensure every baby gets the healthiest start possible. Watch the recording:

Advocacy Intern, Fall 2023, Final Project PresentationTrisomy 18 and Newborn Screening Advocacy

08/26/2025

Our Mental Health Intern, Vy Quynh Vu, presented her final project, shining a light on the critical connection between mental health and the rare disease journey. Vy explored the unique challenges faced by families, caregivers, and individuals living with rare diseases—and the importance of accessible mental health resources to support them.

Her work reminds us that advocacy is not only about treatments and policies—it’s about the whole person, their well-being, and their resilience. We are proud of Vy for her thoughtful research and her dedication to helping families feel supported, understood, and never alone. Watch the recording:

Mental Health Intern, Fall 2023, Final Project PresentationMental Health Campaign

08/25/2025

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 why identifying potential donations is critical to sustaining our mission. Kim also highlighted the vital role of social media messaging in making sure families, advocates, and supporters can find us, connect with us, and join our work.

Her insights remind us that advocacy isn’t just about the cause—it’s about building the resources and visibility to keep that cause moving forward. Thank you Kim for your passion to amplifying our work and expanding our reach. Watch the recording:

General Intern, Fall 2023, Final Project Presentation

08/23/2025

We were honored to host Jaimie Lopez-Alvarez, E.WE Foundation intern, for her presentation: Prenatal Testing: A Health Equity Project.

Trisomy 18 is often identified through prenatal testing—making it essential for families to have clear, accessible, and accurate information to support informed decision-making and better health outcomes. Jaimie’s work underscores the importance of equitable access to education, resources, and compassionate care for all families navigating this diagnosis.

Thank you Jaimie for highlighting this subject. Together, we can bridge the gaps in prenatal testing education. Watch the recording:

Health Equity Intern, Fall 2023, Final Project Presentation

08/22/2025

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

The continuing education workshop highlighted:
✨ Health disparities
✨ Social determinants of health
✨ The factors driving unequal access to care and health outcomes

We’re so proud of Vivian for leading this important conversation and helping us raise awareness about health equity in the rare disease landscape. Watch the recording:

The Health Equity Community Workshop is an organized event designed to educate, engage, and empower participants on the concept of health equity and its sign...

08/21/2025

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

08/20/2025

Behind every meeting, there’s preparation, passion, and purpose—because every conversation is an opportunity to make a difference!

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 and building a community of hope and action!

08/20/2025

Yesterday was National Patient Advocacy Day — and we missed posting about it because we are in the thick of advocacy right now.

Advocacy, for a lot of us, isn’t a one-day observance — it’s every single day. We live it. We breathe it. We carry it forward — for our children, our families, and for every rare disease friend who deserves to be seen and heard.

So while the calendar marked yesterday, we celebrate showing up today, and we’ll keep showing up — tomorrow, the next day, and every day after.

Every day is advocacy day!

Happy National Patient Advocacy Day, late! ✌🏾