Loud and Clear
EE’s approach to communications and outreach is driven by a deep sense of urgency and responsibility. Every opportunity to raise awareness, drive support, and inform an audience matters. In turn, EE has been aggressive in developing a high-impact, comprehensive communications strategy that encompasses a variety of social and digital platforms, as well as traditional media, patient advocacy and education, thought leadership, and speaking engagements. EE has been particularly successful in producing and disseminating video content to help elevate EE’s message on digital channels. In all formats, EE is intentional in honing a clear, consistent voice and strong sense of brand identity.
EE’s wide and growing audience—which includes people with CF from around the world, their families, industry professionals from the medical, pharmaceutical, biotech, and academic communities, as well as the general public—relies on EE for accurate, accessible, and compelling information.
Awareness Campaigns
One of EE’s most extensive annual awareness campaigns centers on CF Awareness Month. The campaign includes a month of digital and social media content that showcases the diverse stories and perspectives of the CF community. The theme of EE’s CF Awareness Month theme each year is “Cross Out CF” to signify the urgent need to expand the progress in CF treatments and finish the job for everyone with CF—with nobody left behind. Utilizing a narrative approach, campaign content provides insight into the daily, lived experiences of individuals with CF as well as their families, caregivers, and anyone else touched by this disease. Among the highlights: guest blog posts written by individuals with CF, artwork created by people with CF and CF siblings, spotlights on the scientific community, and weekly facts about CF shared to social media. These efforts have yielded nearly 175,000 impressions across Facebook, Twitter, LinkedIn and Instagram over the last two years.
EE also annually marks Rare Disease Day on February 28 with a themed week-long digital campaign to raise awareness of the unique experiences of the CF community, especially those with rare mutations, and its role in the larger rare disease community.
In 2022, the campaign theme was “Dare to Be Rare” and in 2023, the theme was “ExtraordinRARE.” Both campaigns offered information and insights on social media to encourage everyone—especially those in the rare disease community—to celebrate and embrace their rare, extraordinary qualities. The 2023 campaign gave particular attention to the disproportionate prevalence of nonwhite populations among the final 10% of the CF community through a series of videos.
The Final 10%: A Diverse Community
While racial diversity exists across the CF population, nonwhite individuals are disproportionately represented in the final 10% with rare and understudied mutations that do not benefit from existing mutation-targeted therapies. EE is focused on bringing vital attention to the unmet needs of nonwhite populations within the final 10%.
Thought Leadership
EE continued to amplify its voice and impact through participation in major events and as a thought leader and resource for the industry. Speaking engagements for the EE team in 2022 and 2023 included virtual and in-person presentations on topics ranging from EE’s clinical trial matchmaking program and venture philanthropy, to how the biotech community can help support EE’s efforts.
Recent Event Highlights:
2023
- EE Co-Founder Emily Kramer-Golinkoff gave a main-stage virtual talk at the STAT News 2023 Summit. Emily shared how EE was formed, the tremendous strides it has made, and the urgent needs that remain.
- Emily gave a virtual talk to the team at 4D Molecular Therapeutics about life with CF and the early days of starting EE and gave a virtual presentation at the FasterCures Research Partnership Maturity Model Interactive Workshop on how EE deploys its financial resources to drive CF research.
- EE’s Clinical Trial Matchmaking Program Manager, Beth Lavin, attended Vertex’s Investigators’ Meeting to present on EE’s role in recruiting for the VX21-522-001 BEACON-CF Study.
- EE CSO Chandra Ghose, PhD, attended The European CF Society Basic Science Conference and the 2023 CFF Research Conference in Montana and spoke at an event for women of color entrepreneurs hosted by Women.NYC, Latinas in Tech NYC & Ernst & Young.
2022
- Emily Kramer Golinkoff participated in a discussion at the Philadelphia Cell and Gene Therapy Conference Fireside Chat.
- Emily gave the closing keynote talk at the Cystic Fibrosis Research Institute (CFRI)’s National CF Education Conference, where she explored the impact of CFTR modulators on the CF community and her experience being part of the 10% left behind due to ineligible mutations.
- Chandra Ghose, PhD, participated in the European Cystic Fibrosis Society Conference, The Food and Drug Administration’s (FDA) Center for Drug Evaluation and Research (CDER) workshop on Regulatory Fitness in Rare Diseases Clinical Trial, and The National Heart, Lung, and Blood Institute (NHLBI) conference on “Current and Future Research Needs in the Era of Highly Effective Modulator Therapies for Cystic Fibrosis.”
Press
Recent news media features on EE have highlighted EE’s role in accelerating research and drug development. Outlets covering EE have included NBC10, Maria Shriver’s Sunday Paper, The Boston Globe, The Pulse at WHCBC, Stat News, and BioSpace. Complete media coverage can be found in the press section of the Emily’s Entourage website.
Social Media Highlights
EE utilizes social media to regularly share updates about the organization and its work. These updates feature research grant announcements, stories of people from the CF community, updates about upcoming events and programmatic activities, media coverage, and more. EE’s online reach includes more than 17,100 followers between Facebook, Instagram, Twitter, and LinkedIn; 51,000+ annual video views; and 120,600+ annual web page views.