A Life That’s Worth Being Seen
During CF Awareness Month, Emily’s Entourage invites members of the CF community to share their stories. Today’s blog post features Ashley Ballou-Bonnema,... Read More
The Quiet Weight of Living with CF
During Cystic Fibrosis Awareness Month, Emily’s Entourage invites members of the CF community to share their stories. Today’s blog post features Joey... Read More
Survival is Never a Solo Act
During CF Awareness Month, Emily’s Entourage invites members of the CF community to share their stories. Today’s blog post features Caleigh Haber... Read More
I Was Rare Among Rare—Until I Wasn’t
During Rare Disease Week, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights... Read More
#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... Read More
Lines of Progress: My Journey from Critical Illness to Change-Making Advocacy
During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights... Read More
Lines of Connection, Paths to Progress: This CF Awareness Month, It’s Time to #CrossOutCF
Cystic Fibrosis Awareness Month 2025 is here, and at Emily’s Entourage (EE), we’re celebrating the unwavering spirit of the cystic fibrosis (CF)... Read More
Emily’s Entourage Co-founder Awarded 2024 Leadership in Personalized Medicine Award by the Personalized Medicine Coalition
Emily Kramer-Golinkoff, an individual with cystic fibrosis and co-founder of Emily’s Entourage, is the winner of this year’s Award for Leadership in... 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
