Advocacy Partner: Emily's Entourage
About Emily's Entourage
Emily’s Entourage (EE) is an innovative 501(c)3 that accelerates research for new treatments and a cure for individuals in the final 10% of the cystic fibrosis (CF) population that do not benefit from currently available mutation-targeted therapies. Since 2011, EE has awarded millions of dollars in research grants, launched a clinical-stage CF gene therapy company, developed a global patient database and clinical trial matchmaking program to accelerate clinical trial recruitment, and led worldwide efforts to drive high-impact research and drug development. Learn more at emilysentourage.org.
For general inquiries:
Phone: 717-926-1721
Email: [email protected]
Resources
CF Clinical Trial Connect
Emily’s Entourage CF Clinical Trial Connect (CTC) is the only global patient database exclusively for people with CF who are unable to benefit from CFTR modulators, including those with ineligible genetic mutations, side effect from CFTR modulators, or suboptimal response to CFTR modulators. By joining CF Clinical Trial Connect, you can help accelerate the development of lifesaving therapies for people for CF.
Emily’s Entourage Blog
The Emily’s Entourage Blog is a hub for the latest breakthroughs, community perspectives, and stories of hope from across the CF community. Explore research updates, personal experiences, and expert insights as we work to accelerate lifesaving therapies for the final 10% of people with CF who do not benefit from existing mutation-targeted treatments.
Dear Future Me’ Campaign
“Dear Future Me” is a powerful reflection on childhood dreams and the harsh reality of living with cystic fibrosis (CF), an unrelenting, deadly and progressive disease that robs your breath, your dreams, your very future.
Told through the eyes of a mother and three individuals with CF, it invites us to consider one critical question:
What if there was a lifesaving option for the final 10% of individuals with CF who do not benefit from existing mutation-targeted therapies?
This is the future Emily’s Entourage fights for—a future where everyone can breathe and dream free, unconstrained by the horrors of CF.
You can help make that future real for the final 10%.
Awarded Grants
Emily’s Entourage’s grant program provides funding to accelerate research and therapeutic development for people with CF that do not benefit from existing mutation-targeted therapies, otherwise known as “the final 10%.”
Our research priorities focus primarily on the development of genetic therapies and therapies that repair or restore the underlying genetic defects for those in the final 10% of the CF community, as well as the development of therapeutic approaches that “buy time” for people living with the disease. “Buying time” approaches include targeting infections or inflammation with a focus on antimicrobial resistance and pathogens that present an unmet need for individuals with CF.
About Advocacy Partners
The information above is provided by our partner. Learn more about our advocacy partners here.
Upcoming Events
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