Emily's Entourage

Accelerating lifesaving research and drug development for the final 10% of people with #cysticfibrosis that don't benefit from mutation-targeted therapies.

[Emily's Entourage @EmilysEntourage]

Lifesaving breakthroughs don’t happen by chance. They’re cultivated. 🏡🪴✨

On Oct. 22, join us for the 2026 EE Gala as we create the precise conditions for progress for the final 10%.

🔗 Add to calendar: https://t.co/XL653wfR9F

#EECrystalPalace #CureCF #CysticFibrosis #CF

[Emily's Entourage @EmilysEntourage]

While #CysticFibrosisAwareness Month may be ending, our resolve here at Emily’s Entourage is stronger than ever.

We’ll keep racing until we #CrossOutCF—for every single person living with #cysticfibrosis and the people who love them.

100%, full stop! ❌💜

#CureCF #CF

[Emily's Entourage @EmilysEntourage]

🔎 #FactFriday: Advanced In 2024, more than 97.3% of individuals with advanced lung disease were adults, with a median age of just 36.8 years.

Progress has changed what’s possible. But for many in the #cysticfibrosis community, progress is still beyond reach.

#CrossOutCF

[Emily's Entourage @EmilysEntourage]

🔎 #FactFriday: On average, people with #CF spend nearly two weeks per year hospitalized due to pulmonary exacerbations.

That’s time away from work, family, and living life to its fullest.

💜 Share to help raise awareness this #CFAwarenessMonth as we work to #CrossOutCF.

[Emily's Entourage @EmilysEntourage]

🔎 #FactFriday: According to EE's Final 10% Survey, 70.4% of adults with #CF spend 1–4 hours every day on treatments to open their airways and help move mucus in their lungs.🤯

That’s up to 25% of waking hours spent tethered to medical treatments—just to breathe!!!

#CrossOutCF

[Emily's Entourage @EmilysEntourage]

#SpeakUpCF: From constant worry and insidious "what ifs" to the quiet calculations behind everyday decisions, #cysticfibrosis is an exhausting disease. 🫩

💬 What’s something no one talks about when it comes to life with #CF?

Share with us ⬇️

#CrossOutCF #CureCF

[Emily's Entourage @EmilysEntourage]

🔎 #FactFriday: There are nearly 40,000 individuals living with #cysticfibrosis in the U.S. and 105,000 worldwide.

That’s 105,000 reasons to move faster.

Time is of the essence. 100% or bust.

💜 Share to help raise awareness this #CFAwarenessMonth as we work to #CrossOutCF.

[Emily's Entourage @EmilysEntourage]

It’s May 1—#CysticFibrosisAwareness Month begins!

Join us as we #CrossOutCF by peeling back assumptions and reveal what life with #cysticfibrosis really looks like. ❌💜

🔗 Learn more: https://t.co/BKfGeDtQNr

#CureCF #CF #CFAwareness

[Emily's Entourage @EmilysEntourage]

A powerful perspective: rare disease is one of the largest unmet medical needs—and this moment is different because we finally have the tools to act.

We’re working to bring this progress to #CF.

Read more >>> https://t.co/hhKrYpkdxZ

#CureCF #CysticFibrosis #RareDisease

[Emily's Entourage @EmilysEntourage]

💥 Big news from Emily’s Entourage!

We’ve appointed David A. Waltz, MD, as our first-ever Chief Medical Officer—accelerating progress toward new therapies for the final 10% with #cysticfibrosis.

Learn more: https://t.co/HBalku1avf

#CureCF #CFAwareness #CFScience

[Emily's Entourage @EmilysEntourage]

Bold ideas. Relentless tenacity. Unstoppable women. 💜

Today, on #nternationalWomensDay, we celebrate the passion, leadership, & determination of the remarkable women in the #cysticfibrosis community.

We are endlessly grateful—& forever inspired. 💪💜

#CureCF

[Emily's Entourage @EmilysEntourage]

That’s a wrap!

#RareDiseaseWeek has come to a close—
but don’t get it twisted: the work doesn’t end here.

Because the rare community doesn’t stop at “almost.”

That’s the thing about those of us who are #MadeThisWay: we refuse to leave anyone behind.💥

#CureCF #RareDisease

[Emily's Entourage @EmilysEntourage]

✨ Today, rare takes center stage. It’s #RareDiseaseDay—a moment to honor the grit, heart, & connection of the #raredisease community.

At EE, rare isn’t hidden. It’s carried with pride. It fuels our push for lifesaving change.

You are #ExtraordinRARE.
You are #MadeThisWay. 💜

[Emily's Entourage @EmilysEntourage]

Life with a #RareDisease like #CysticFibrosis is hard.

Hospital stays. Hard conversations. Uncertainty. Fear.

But somewhere along the way, it shapes you.

Reveals strength. Amplifies your voice. Proves we’re stronger together.

That’s #MadeThisWay. That’s #ExtraordinRARE.

#CF

[Emily's Entourage @EmilysEntourage]

Bree Hankins knows what it means to be rare among rare.

Left in the final 10% of #CysticFibrosis, she watched breakthroughs pass her by—until one late-night search changed everything.

Read her #MadeThisWay story 👉https://t.co/mEHQrWExpv

#CureCF #ExtraordinRARE

[Emily's Entourage @EmilysEntourage]

We didn’t choose rare.
But we choose how we stand in it.
7,000+ #RareDiseases. 400M+ lives.

We are #ExtraordinRARE.
We were #MadeThisWay.

👉 https://t.co/n56V93f1LE

Thank you to our Tier 1 sponsor, @vertexpharma for helping fuel progress behind this mission!

[Emily's Entourage @EmilysEntourage]

7,000+ rare diseases.
400+ million people.

This week, we’re not whispering.

Something bold is coming.
And it was #MadeThisWay. 👀💥

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#RareDiseaseWeek #RareDiseases #CureCF #ExtraordinRARE

[Emily's Entourage @EmilysEntourage]

Roses are red. Violets are blue.
Science is how we’ll get breakthroughs for you!

And we’re not waiting around.

Every day, Emily’s Entourage is working to move #science forward, faster for those with #cysticfibrosis left behind.

Happy #ValentinesDay! 💜

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#CureCF #CF

[Emily's Entourage @EmilysEntourage]

Time flies when you’re racing to create RARE change and lifesaving breakthroughs…💜💪

So grateful to @RareRevolutionM for the shout-out and the beautiful trip down memory lane.

Happy 10-year anniversary! 🎉

#CureCF #CysticFibrosis #CFAwareness #CF

[RARE Revolution Magazine® @RareRevolutionM]

We are taking a trip down memory lane as we celebrate our 10th Birthday this year.

This was our third edition where we focused on RARE and Corporate and highlighted the incredible partnerships between industry and patient organisations.

"This dynamic front cover features our RARE inspiration, Emily Kramer-Golinkoff. Emily has advanced stage cystic fibrosis (CF), a progressive genetic disease which primarily affects the lungs and digestive system—so beautifully illustrated by Emily’s cover outfit. In 2011, Emily launched the non-profit, Emily’s Entourage, to help accelerate research for this ever-advancing rare disease. The organisation has raised millions of dollars for research and built a strong and supportive community. Emily’s unwavering drive and determination, throughout her life, have had a profound and lasting impact on the CF, and wider rare disease, landscape." - Emma Bishop, associate editorial and design

Read the full edition here: https://t.co/QZ3ArLuNgO

#RR10 #RARERev10 #RARERevolut10n #ThrowbackThursday

[Emily's Entourage @EmilysEntourage]

💜Now Open: The @VertexPharma Foundation Scholarship Program is near & dear to us! It supports people with #CF and their families in pursuing their education dreams.

📅 Apply by Feb 24, 2026! Learn more: https://t.co/kdVqDlZYoZ

#CysticFibrosis #Scholarship #CFAwareness