Emily Kramer-Golinkoff

About Emily Kramer-Golinkoff

Emily Kramer-Golinkoff is Co-Founder of Emily\'s Entourage, an innovative 501(c)3 that accelerates research for individuals in the final 10% of the cystic fibrosis (CF) population that do not benefit from existing mutation-targeted therapies. She is also an internationally recognized patient advocate and speaker.Since 2011, Emily’s Entourage 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. She has given talks at The White House, TEDx, University of Pennsylvania\'s Annenberg School for Communication Commencement, Stanford University\'s Medicine X Conference, and more. Emily was named a “Champion of Change” for President Obama’s Precision Medicine Initiative and is the recipient of the 2024 Personalized Medicine Coalition\'s Award in Leadership in Personalized Medicine, 2020 Philadelphia Magazine Luminary Award, and the 2016 Global Genes Rare Champion of Hope for Advocacy Award. Her professional background is in marketing and digital health research.Emily believes that stories, human connections, and collaboration can change the world, including health care, and that technology is a powerful tool to help us get there.

Experience

1. Co-founder

   Emily\'s Entourage

   Dec 2011 — Present

   Emily’s Entourage 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 does not benefit from currently available mutation-targeted therapies. By providing critical leadership and coordination, EE drives high-impact research, cultivates multi-stakeholder collaboration, and facilitates information exchange to speed breakthroughs. Since 2011, Emily’s Entourage 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. The organization\'s work is particularly critical now as revolutionary breakthroughs are available for roughly 90% of the CF population, but those in the outlying 10% unfortunately do not benefit from these major advances. EE is laser-focused on changing that—and doing it fast, so nobody is left behind.The organization has been featured in the New York Times, STAT, CNN, TheSkimm, People, and more. I\'ve been honored to be named a “Champion of Change” for President Obama’s Precision Medicine Initiative and the recipient of the 2024 Personalized Medicine Coalition\'s Award in Leadership in Personalized Medicine, 2020 Philadelphia Magazine Luminary Award, and the 2016 Global Genes Rare Champion of Hope for Advocacy Award.

Education

• University of Pennsylvania School of Medicine

  MBE, Bioethics

  2009 — 2013

• University of Pennsylvania School of Medicine

  Certificate, Clinical Ethics Mediation

  2009 — 2013

• University of Pennsylvania

  BA, Communication

  2003 — 2007

Skills

• Marketing
• Nonprofits
• Video Production
• Marketing Communications
• Facebook
• Healthcare
• Digital Marketing
• Brand Development
• Media Relations
• Event Planning
• Fundraising
• Marketing Strategy
• Strategic Communications
• Newsletters
• Editing
• Copywriting
• Nonprofit Organizations
• Social Networking
• Social Media Marketing
• Social Media
• Direct Marketing
• Non-Profits
• Blogging
• Research