#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
Introducing #ExtraordinRARE 2025: A Bold New Rare Disease Week Expedition
Every journey begins with a single step. For the rare disease community, that step is often taken against formidable odds—navigating a landscape... Read More
Emily Speaks at Translate Bio’s CF Awareness Month Event
On May 29, Emily’s Entourage (EE) attended Translate Bio’s Cystic Fibrosis (CF) Awareness Month event in Boston. EE Co-Founder, Emily Kramer-Golinkoff, provided... Read More
The Flotation Device I Cling To: Living with Nonsense Mutations of CF
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
