Emily's Entourage

02 Aug 2021

Straddling the Line Between the Sick and Well Worlds: A Mother Shares Her Late Daughter’s 25-Year-Long Battle With Cystic Fibrosis

On Thursday, July 15, 2021, Emily’s Entourage (EE) held a “Patient Listening Session” with the U.S. Food and Drug Administration (FDA) to advocate on behalf of the final 10% of...

22 Jul 2021

Recap: FDA Listening Session for the Final 10% of People With Cystic Fibrosis, Hosted by Emily’s Entourage

On Thursday, July 15, 2021, Emily’s Entourage (EE) held a “Patient Listening Session” with the U.S. Food and Drug Administration (FDA) to advocate on behalf of the final 10% of...

21 Jun 2021

Drawing a Future Without CF: Recap of EENY’s 2021 Virtual Event

With the world is still in the throes of a global pandemic and in-person gatherings, while starting to take hold, still not yet a fully safe reality for many, Emily’s...

27 May 2021

Living My Dream — With CF

We are honored to share voices from the Cystic Fibrosis (CF) community as part of our blog series for CF Awareness Month. Today’s guest writer is Steve Bell, healthcare brand...

13 May 2021

About The Champions The Emily’s Entourage (EE) Champions campaign recognizes philanthropic leaders helping to make a difference in the mission to speed life-saving breakthroughs and a cure for Cystic Fibrosis...

12 May 2021

Education and Community: Lifelines for Living with CF

We are honored to share voices from the Cystic Fibrosis (CF) community as part of our blog series for CF Awareness Month. Today’s guest writer is Katie Fielding, a teacher,...

27 Apr 2021

GRAB A MARKER AND #CROSSOUTCF: MAY IS CYSTIC FIBROSIS AWARENESS MONTH

During Cystic Fibrosis (CF) Awareness Month, we come together as a community to spread awareness, share personal stories, and unite behind a common mission to speed breakthroughs and a cure...

22 Feb 2021

EE Rare Disease Week 2021: “Rare is Everywhere”

Rare Disease Week, which launches on February 22 in celebration of Rare Disease Day on February 28, is an annual celebration to raise awareness for rare diseases. It is a...

19 Feb 2021

“Magic Line” Campaign Exceeds Goals, Takes EE to New Heights

With the Covid pandemic putting a halt to in-person fundraising events in 2020, Emily’s Entourage (EE) sought to reinvent its annual campaign in true EE fashion by dreaming big and...

02 Feb 2021

Emily’s Entourage Debuts “The Magic Line,” Launches Push to the Final Summit of CF

Emily’s Entourage (EE) has never shied away from a challenge. That is to be expected for an organization that is speeding life-saving research and drug development for those with nonsense...

06 Jan 2021

The Gift of Aging: Happy 36th Birthday, Emily!

Today’s guest blogger is our treasured Emily’s Entourage (EE) Board Member and Emily’s lifelong best friend, Jessica Rutstein Lazarus, whose post officially launches our #36for36 campaign and birthday celebration for...

16 Sep 2020

EE Awards $790,000 in Round 5 Funding for Cystic Fibrosis Research

Emily’s Entourage (EE) is thrilled to announce that four new grants have been awarded to advance Cystic Fibrosis (CF) research and drug development, totaling $790,000 to be given over two...

16 Sep 2020

EE Launches Pilot Patient Registry Collaboration with Translate Bio

In September, Emily’s Entourage (EE) launched a first-of-its-kind collaboration with Translate Bio to pilot its Cystic Fibrosis (CF) Nonsense Mutation Patient Registry as a tool for clinical trial patient identification...

30 Jul 2020

Once Upon an Entourage: A Parisian Changemaker Shares Her Story

From time to time we invite guest bloggers who are part of the Emily’s Entourage (EE) community to contribute their unique voices to our blog. Today’s guest is Chloé Plissonneau-Duquène,...

10 Jul 2020

Listening Isn’t Nonsense: Becoming Your Own Patient Advocate

From time to time we invite guest bloggers who are part of the Emily’s Entourage (EE) community to contribute their unique voices to our blog. Today’s guest is Nicole Kohr,...

29 Jun 2020

Desperation Can Spur Innovation: Recap of EE’s First Virtual Event

As planning began for the 5th annual EENY spring event, the world was coming to terms with some stark new realities. The Emily’s Entourage (EE) leadership team quickly determined that...

18 May 2020

High Risk During a Pandemic: The CF Community’s Superpower

From time to time we invite guest bloggers who are part of the Emily’s Entourage (EE) community to contribute their unique voices to our blog. In honor of May being...

11 May 2020

Mixed Feelings: Living with Rare CF Mutations

From time to time we invite guest bloggers who are part of the Emily’s Entourage (EE) community to contribute their unique voices to our blog. In honor of May being...

01 May 2020

All Hands On Deck: It is Cystic Fibrosis Awareness Month

While days seem to blend together lately and time somehow feels both infinitely short and long, there is one thing we know for sure. May is Cystic Fibrosis (CF) Awareness...

14 Mar 2020

Staying Safe and Staying Sane: Tips From an Infection Control Vet During the Coronavirus Outbreak

On today’s blog, Emily’s Entourage Co-Founder, Emily Kramer-Golinkoff, draws on her lifetime of experience taking preventive measures to avoid germs as a result of Cystic Fibrosis. She shares her top...

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