Stolen Dreams and Freedom: An Adult With CF’s Journey to a Double-Lung Transplant
On Thursday, July 15, 2021, Emily’s Entourage (EE) held a “Patient Listening Session” with the U.S. Food and Drug Administration (FDA) to... Read More
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... Read More
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... Read More
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... Read More
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... Read More
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... Read More
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... Read More
The Only Thing You Have Control Over: Appreciating CF Caregiving
From time to time we invite guest bloggers who are part of the Emily’s Entourage (EE) community to contribute their unique voices... Read More
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... Read More
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... Read More
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