The E.WE Foundation

05/06/2026

Caregivers carry more than schedules and medications.

They carry:
• Fear
• Uncertainty
• Exhaustion
• Advocacy responsibilities

And often… they carry it silently.

If you’re a caregiver in the rare disease community—your mental health matters too. You deserve support, space to breathe, and care that includes you.

🟩 Take a moment today to check in with yourself.
🟩 Ask for help if you need it.
🟩 Know that you are not alone.

You are not just the support system.
You are a person who needs support, too.

Explore our efforts: https://theewefoundation.org/zebra

05/01/2026

Mental health matters in every diagnosis. For individuals and families living with rare or medically complex conditions, the emotional impact is real, and often invisible.

This May, for Mental Health Awareness Month, we’re raising awareness, sharing resources, and holding space for the rare disease community because support shouldn’t be limited by stigma, geography, or diagnosis.

At E.WE Foundation, we believe mental health affects:
Any Person. Any Diagnosis. Anywhere.

Learn more: https://theewefoundation.org/mentalhealth

04/30/2026

Registration is NOW OPEN!

Join us for the 2026 LEAP into Advocacy Summit—a hybrid event bringing together patients, caregivers, advocates, students, healthcare professionals, researchers, and partners to turn knowledge into real-world impact.

📅 June 25, 2026
📍 In-person at the University of Alabama in Huntsville + Virtual

This year’s theme: Transforming Knowledge and Innovation Into Real-World Impact

From advocacy and policy to research, storytelling, and community-driven solutions—this is where ideas move into action.

Register now: https://theewefoundation.org/register

This event is approved for 6 CEs.

04/23/2026

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.

We’ve created a short, self-paced learning module to help you recognize the signs, understand risk factors, and take action to protect children.

In just 6 minutes, you can become part of the solution.

Access the learning module here:

Child Abuse & Neglect Prevention Training | Self-Paced Learning Module

04/18/2026

April is Child Abuse & Neglect Prevention Month. Child abuse and neglect are more common than many realize—but prevention starts with awareness. By strengthening families, increasing awareness, and supporting early intervention, we can create safer environments where every child can thrive.

Every child deserves to feel safe, seen, and supported.

Learn the signs. Share the message. Be part of prevention.
https://theewefoundation.org/abuseprevention/

03/26/2026

Save the Date! Our annual LEAP into Advocacy Summit is happening June 25 at the University of Alabama Huntsville and virtually!

This event is for patients, families, advocates, researchers, clinicians, physicians, legislators, and anyone else affected by or interested in rare, genetic, and medically complex conditions.

Join us in-person on June 24 for a networking meet and greet! Enjoy food, music, and conversation! Registration opens in April!

We hope to see you there!

03/18/2026

Today is Trisomy 18 Awareness Day.

Trisomy 18 is often defined by limitations and clinical language that tells families what won’t happen. But that’s not the full story.

Families navigating Trisomy 18 diagnoses experience love. Connection. And, moments that matter.

The E.WE Foundation exists because families deserve more than a diagnosis. They deserve support. They deserve options. They deserve to be seen, heard, and valued.

Our work is rooted in advocacy, in equity, and in changing how systems respond to families from the very beginning.

Today we honor every child and every family impacted by Trisomy 18. And we continue the work — because this is just the beginning!

Happy Trisomy 18 Awareness Day!

03/04/2026

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.

Families and clinicians can navigate this complex journey together, and we’re here to support every step! Learn how at theewefoundation.org!

Image: WebMD

03/01/2026

March is — 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, strengthen our advocacy, and push for equitable care for all children, no matter their diagnosis.

Every life has value. Every voice matters.

Happy Trisomy Awareness Month!

03/01/2026

Rare diseases affect 1 in 10 people, and behind every diagnosis is a family searching for answers, a researcher pushing boundaries, and an advocate driving change.

That’s why LEAP into Advocacy Summit 2026 matters. This isn’t just another conference—it’s where science meets policy, patients meet innovators, and knowledge turns into real-world impact.

On June 25, 2026, at the University of Alabama in Huntsville and virtually, leaders from across the rare disease ecosystem will come together to transform knowledge into action—because breakthroughs don’t happen in isolation. They happen when we LEAP together.

Save the date. Join the movement.

03/01/2026

The E.WE Foundation was in Washington, DC for Rare Disease Week, hosted by the EveryLife Foundation for Rare Diseases.

We showed up to ensure families affected by rare and genetic conditions are seen, heard, and represented—not just within one diagnosis, but across the rare disease community as a whole. From policy briefings to meetings with lawmakers, this week was about amplifying patient and caregiver voices, advancing equitable policy, and reinforcing that rare disease is a public health issue.

Representation matters. Presence matters. And sustained advocacy matters.

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 the 1 in 10 people living with a rare disease.

The work continues—on Capitol Hill and at home.