The Cystic Fibrosis Foundation’s 2020–2024 long-term strategic plan served as a powerful guide for driving progress for people with cystic fibrosis. Over this period, in partnership with our community, we achieved significant milestones — advancing science and clinical care, deepening connection and support, and gaining greater insight into the changing experience of living with CF. Together, we improved and extended life for many with the disease.
This strategic period began with a surprise: the global COVID-19 pandemic. The CF community — long used to connecting online, due to infection risk — came together virtually to support one another. At the Foundation, we had just welcomed our new president and CEO, Michael P. Boyle, MD, who rallied the organization to maintain momentum toward our mission. We designated 2025 as an additional bridge year in the strategic plan to apply community and research learnings to inform the next plan.
We have much to celebrate from this time. From a steadily increasing adult CF population (56% in 2019 to 62% in 2024) to more people becoming eligible for modulators (94% of those in the Foundation’s Patient Registry), we saw — and continue to see — many people with CF living longer and healthier lives.
But CF is a complex, challenging disease, and many are still waiting for transformative treatments. The Foundation remains deeply committed to our mission of finding a cure for all and recognizes the urgent work ahead.
Advancing Research Toward a Cure
Throughout this strategic plan period, the Foundation invested in 31 industry drug development programs, focusing on therapies and technologies with the greatest potential to achieve breakthroughs for everyone with CF. In addition to these drug development programs, sixteen therapies for CF entered clinical trials in the U.S. via the Foundation-supported Therapeutics Development Network, and two therapies received FDA approval for people with CF (Alyftrek and Bronchitol). Through strategic investments and research, the Foundation advanced genetic therapies, supported development of additional CFTR modulators, and strengthened efforts to address infection — one of the most challenging complications of the disease.
In 2024, the Foundation made significant investments in two gene editing technologies focused on developing a cure for CF (from Prime Medicine and ReCode Therapeutics). These investments underscore the Foundation’s commitment to supporting early-stage science and paving the way for transformative treatments that could benefit all people with CF, especially those who are not eligible for or cannot tolerate CFTR modulators.
Delivering on Care
As part of the strategic planning process, the Foundation explored how telehealth could expand routine, preventative care for people with CF. The pandemic accelerated this need. During this period, the CF care center network saw a five-fold increase in virtual care visits. The Foundation provided more than 10,000 spirometer kits to people with CF and their families across the U.S. to help monitor lung health at home and advocated for a policy that would help the nation move toward a more sustainable, equitable model for telehealth.
The Foundation’s Patient Registry remained an essential resource for identifying unmet needs and guiding progress in care, outcomes, and opportunities to improve lives. According to the Foundation’s Annual Review for Accreditation, used to evaluate CF Care Centers in our nationwide network, the percentage of programs reporting use of the Patient Registry to share information with people with CF and families has remained steady since 2020 at 86%; the percentage using it in at least half of all visits increased from 42% in 2020 to 51% in 2024.
Continuing Community Support
As demand for support grew, Compass, the Foundation’s free, one-on-one service, continued to play a vital role in helping people with CF and their families navigate challenges including access to care, insurance coverage, and expenses. Engagement rose steadily — an average of 9.8% every year since 2019 — reaching nearly 7,900 people in 2024.
Engagement with Community Voice — the Foundation’s virtual network connecting people with CF and their families — also continued to grow. This platform empowers individuals to share perspectives that inform CF research, care, programs, and strategic priorities. Today, more than 2,000 members contribute their experiences through Community Voice.
What Lies Ahead
We deeply appreciate everyone who has contributed to progress in CF in recent years — particularly people with CF, whose strength, determination, and resilience inspire us every day. Thank you for sharing your voices and your journeys. You remain at the heart of everything we do.
As the Foundation looks ahead to our next strategic plan, we see clear opportunities and challenges, from scientific innovation to access to affordable care. We will be sharpening our focus and uniting around essential priorities to make maximum impact for people with CF over time. Check back in early 2026 to see what’s next at cff.org/5YEARPLAN.