Glitter and Grit: Finding Hope Through Art and Cystic Fibrosis
During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s post features Dylan... Lire la suite
CF Before Birth: How One Couple Used Modulators for In Utero Treatment to Improve Health Outcomes for Their Child
During CF Awareness Month, Emily’s Entourage invites members of the CF community to share their stories. Today’s blog post features Chris and... Lire la suite
Keep Moving Forward: Tips For Staying Positive in The Final 10%
Pendant le Mois de la sensibilisation à la fibrose kystique, l'Entourage d'Emily invite les membres de la communauté de la fibrose kystique (FK) à partager leurs histoires. Le billet d'aujourd'hui met en lumière... Lire la suite
Lines of Progress: My Journey from Critical Illness to Change-Making Advocacy
Pendant le Mois de la sensibilisation à la fibrose kystique, l'Entourage d'Emily invite les membres de la communauté de la fibrose kystique (FK) à partager leurs histoires. Le billet d'aujourd'hui met en lumière... Lire la suite
The CF Brother Who Became a CF Scientist
Pendant le Mois de la sensibilisation à la fibrose kystique, l'Entourage d'Emily invite les membres de la communauté de la fibrose kystique (FK) à partager leurs histoires. Le billet d'aujourd'hui met en lumière... Lire la suite
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)... Lire la suite
The Delivery of Hope: Reflections from the 2025 EE Scientific Symposium on Gene Delivery
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... Lire la suite
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... Lire la suite
What’s the best that could happen?
By Jessica Rutstein Lazarus, PsyD, Emily’s Entourage board member and Emily’s lifelong best friend Happy 40th Birthday, Em! Happy New Year, everyone!... Lire la suite
Racing Toward a Cure: Team EE Shines in the 2024 Philadelphia Marathon
There’s a certain magic to the weekend of the Philadelphia Marathon that’s hard to put into words—a mix of determination, excitement, and... Lire la suite
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