Emily's Entourage

Glitter and Grit: Finding Hope Through Art and Cystic Fibrosis

30 Apr. 2025

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s post features Dylan...

CF Before Birth: How One Couple Used Modulators for In Utero Treatment to Improve Health Outcomes for Their Child

30 Apr. 2025

During CF Awareness Month, Emily’s Entourage invites members of the CF community to share their stories. Today’s blog post features Chris and...

Lines of Progress: My Journey from Critical Illness to Change-Making Advocacy

30 Apr. 2025

Während des Mukoviszidose-Monats lädt Emily's Entourage Mitglieder der Mukoviszidose-Gemeinschaft ein, ihre Geschichten zu erzählen. Der heutige Blogbeitrag beleuchtet...

The CF Brother Who Became a CF Scientist

30 Apr. 2025

Während des Mukoviszidose-Monats lädt Emily's Entourage Mitglieder der Mukoviszidose-Gemeinschaft ein, ihre Geschichten zu erzählen. Der heutige Blogbeitrag beleuchtet...

Lines of Connection, Paths to Progress: This CF Awareness Month, It’s Time to #CrossOutCF

30 Apr. 2025

Cystic Fibrosis Awareness Month 2025 is here, and at Emily’s Entourage (EE), we’re celebrating the unwavering spirit of the cystic fibrosis (CF)...

The Delivery of Hope: Reflections from the 2025 EE Scientific Symposium on Gene Delivery

27 März 2025

For the final 10% of the cystic fibrosis (CF) community—those who do not benefit from mutation-targeted therapies—the wait for a lifesaving breakthrough...

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...

What’s the best that could happen?

07 Jan. 2025

By Jessica Rutstein Lazarus, PsyD, Emily’s Entourage board member and Emily’s lifelong best friend Happy 40th Birthday, Em! Happy New Year, everyone!...