Emily's Entourage » rare disease

Introducing #ExtraordinRARE 2025: A Bold New Rare Disease Week Expedition

19 Feb 2025

Every journey begins with a single step. For the rare disease community, that step is often taken against formidable odds—navigating a landscape...

Emily Speaks at Translate Bio’s CF Awareness Month Event

29 May 2019

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...

The Flotation Device I Cling To: Living with Nonsense Mutations of CF

03 May 2019

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