A Global Network for Families with Rare Diseases and the Professionals Who Serve Them

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Start Here: Who We Are

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Support Our Work

Meet the People Behind E.WE

Sarita Edwards, MHA, President & CEO

Kareem Edwards, BS, VP of Operations

Our Programs

LEAP is a comprehensive initiative designed to support families, individuals, and the professionals who serve them by improving health literacy and empowering informed, confident decision-making. Through educational workshops, webinars, and digital resources, LEAP bridges knowledge gaps and equips communities with the tools to navigate rare disease care and advocacy efforts.

Key Features:
- Interactive advocacy training
- Educational modules on navigating rare disease care
- Community empowerment sessions

LEAP

The ZEBRA Program provides a safe, compassionate space for individuals and families to foster emotional and mental wellness. From peer support to comfort care initiatives, ZEBRA helps communities cope with the psychological impact of life-altering diagnoses and loss. The program promotes resilience, reduces stigma, and offers holistic mental health support.

ZEBRA

STRIPE provides financial assistance and comprehensive support to families affected by Trisomy 18, particularly those facing economic hardship. Beyond emergency funding, STRIPE connects families with counseling, education, and other essential services to promote long-term stability and well-being.

STRIPE

Learn & Explore

Throughout the year, the E.WE Foundation hosts and participates in events that connect families, professionals, and advocates across the rare disease community. Our monthly events are designed to educate, empower, and inspire action — featuring virtual workshops, webinars, national observances, and global awareness campaigns. Explore our fiscal calendar to discover upcoming opportunities for learning, connection, and advocacy.

Upcoming Events & Campaigns

Being Rare is a talk radio–style podcast that explores the issues shaping the rare disease and health equity landscape.

Each episode dives into real conversations at the intersection of policy, practice, and patient experience. Through bold, unscripted discussions with thought leaders, clinicians, advocates, and changemakers, we explore topics about health equity, care access, innovation & policy, community, and collaboration. Known for its mix of short insights and deep-dive interviews, Being Rare unpacks complex issues with honesty and intention — creating space for ideas that move the conversation forward.

🎧 Listen anywhere you stream your podcasts
📺 Watch episodes on YouTube

Being Rare Podcast

Watch on YouTube

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Get Involved

At The E.WE Foundation, we believe that lasting change happens through collaboration. By working alongside local, national, and international partners, we amplify our mission in advocacy, education, research, and public policy. These partnerships help us create innovative solutions, strengthen support for families impacted by Trisomy 18 and other rare diseases, and equip the professionals who serve them.

If you are interested in becoming a partner of The E.WE Foundation, email us at admin@theewefoundation.org

Partner With Us

We are honored to share our story, research, and advocacy across national and international platforms. From podcasts and documentaries to news articles and policy discussions, these features help amplify the voices of families impacted by Trisomy 18 and other rare diseases.

Click below to check out some of our features!

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