#MadeThisWay: How We’re Claiming Rare During Rare Disease Week 2026

At Emily’s Entourage (EE), rare isn’t something we tiptoe around.
It isn’t something to soften, explain away, or make smaller so it’s easier for the world to digest.

This Rare Disease Week, we’re showing up boldly. Proudly. Out loud.
Because rare isn’t a flaw to be erased—it’s an identity to be claimed.

Welcome to #ExtraordinRARE 2026, shaped this year by a simple, unmistakable truth:

We were #MadeThisWay.

Rare, By Definition—and By Design

In the United States, a disease affecting fewer than 200,000 people is considered rare. Cystic fibrosis (CF) affects approximately 40,000 Americans and more than 105,000 people worldwide, placing it firmly in the rare disease category.

But within CF exists an even rarer reality.

Die final 10% of people with CF—those who do not benefit from currently available mutation-targeted therapies—represent an ultra-rare community within an already rare disease.

This is the community EE exists to serve. And it’s why we refuse to accept “rare” as a reason to slow down or disappear.

Because rare isn’t small.

Rare matters.
And those with rare mutations of CF deserve lifesaving solutions fast.

#ExtraordinRARE, Made This Way

For years, people with rare diseases have been told to wait patiently—for attention, for funding, for answers.

This year’s campaign says something different.

We’re not waiting. We won’t be quiet.
And we’re not apologizing for demanding attention.

#ExtraordinRARE has always been about celebrating the people who live rare every day—their resilience, their ingenuity, their refusal to be left behind.

#MadeThisWay is how that truth shows up in 2026.

It’s about claiming space, honoring the advocacy, urgency, and strength that rare communities have built long before the system was ready to meet them, and demanding that we act fast and with urgency to address our critical needs.

#MadeThisWay is not a slogan.
It’s a declaration.

We are here. We are proud. And we are moving lifesaving science forward quickly—together.

Proof, Not Promises

And that’s where Emily’s Entourage (EE) comes in.

Every day, we take on the hardest challenges facing the final 10%—funding bold science, advancing clinical trials, and rejecting the idea that “too rare” means “too difficult.” We take as many shots on goal as possible, because breakthroughs aren’t born from a single bet, but from vision, strategy, and tenacity applied over time.

That commitment shows up in real, measurable progress.

As of January 2026, Emily’s Entourage has:

Awarded 42 research projects to top investigators around the world, securing more than $73.1 million in follow-on funding
Deployed a venture philanthropy model to help spin out a clinical-stage CF gene therapy company
Advanced five research projects to clinical stage, translating discovery into real-world therapies
Developed 353+ bacteriophages that have treated 106 people with antibiotic-resistant infections, including 50+ individuals with CF
Expanded our global Clinical Trial Connect (CTC) database to include participants in 46 states and 52 countries
Launched the Gene Therapy Consortium, uniting clinical-stage mRNA and genetic therapy companies to tackle industry-wide challenges and opportunities with unprecedented collaboration.

These aren’t abstract wins.
They’re momentum.

They reflect what it looks like to keep showing up—day in and day out—to push, build, and advance until we reach lifesaving breakthroughs.

Rare Disease Week Starts Now

Rare Disease Week 2026 runs from Sunday, February 22 through Sunday, March 1, culminating on Rare Disease Day, February 28.

Throughout the week, we’ll be sharing stories, insights, and proof of what’s possible when our proud rare identity meets bold action.

This isn’t about asking for permission.
It’s about claiming space.

If you’ve ever felt unseen, overlooked, or told to wait—this is for you.

We are rare.
We are strong.
We are #MadeThisWay

How You Can Take Action

Celebrate #MadeThisWay with us:

Follow along and engage with Emily’s Entourage on Facebook, Instagram, LinkedIn, X throughout the week.
Share what makes you proud to be part of the rare disease community using #MadeThisWay und #ExtraordinRARE. Don’t forget to tag us!

Help create the soundtrack to rare pride:

Add the songs that hype you up, ground you, or make you feel powerful to our community #MadeThisWay Spotify playlist—the anthem of showing up exactly as you are.

Fuel real change: