This past fall, the CF Foundation requested community participation in the 2024 Strategic Plan Input Survey to help better understand their specific priorities for the CF Foundation, the burden of living with CF, and other challenges associated with the disease.

“The CF Foundation is committed to working in partnership with members of the cystic fibrosis community — the foremost experts on navigating life with CF," said Marin Goings, chief of strategy at the Foundation. “We're grateful for these unique insights and how they can inform our vision for the Foundation’s future so that it includes as many experiences with CF as possible.” 

These survey results will be a critical tool for the Foundation in developing priorities for its next strategic plan and ultimately supporting its mission of providing all people with CF the opportunity to lead long, fulfilling lives.

Key Findings

CF Research and Care Are Equally Important to Achieving the Foundation’s Mission

Overall, survey respondents want the CF Foundation to continue funding research and drug development for a cure and for disease complications. This underscores the community's commitment to prioritizing the needs of every person with CF regardless of where they are on their journey with the disease.

Within the category of research, survey respondents identify the following areas of focus as top priorities:

• Genetic therapies
• Digestive complications
• Aging with CF
• Mental health with CF
• Infections

CF Remains a Burdensome Disease

Despite improvements in quality of care and the majority of people with CF being eligible for CFTR modulators, many still have challenging aspects of their disease.

• Digestive system complications
• Managing coordination of CF care
• Antibiotic resistance or lack of antibiotic options
• Infections or pulmonary exacerbations
• Mental health complications

Aging and Digestive Issues Are Top Concerns

After learning from this survey that digestive issues and aging are considered top issues for both research priorities and symptom burden, the Foundation conducted a follow-up survey to dig deeper, hearing from more than 500 adults with CF and caregivers.

About 40% of respondents indicate moderate or severe burden with the following issues:

• Bloating or gas
• Diarrhea
• Constipation
• Abdominal pain

Related to aging with CF, half of follow-up survey respondents indicate the following as top areas where the CF Foundation should support research or provide best care practices:

• CF lung disease progression
• Long-term effects and risks of CFTR modulators
• CF-related diabetes
• Cancer and CF

CF Care Teams Highlight Challenges to Delivering the Best Care for Their Patients

CF care teams remain a critical part of the CF community and a valuable resource for patients and families, particularly as people with CF are experiencing significant changes to their health as they live longer. However, in today’s health care environment, care team members experience a wide range of challenges to optimizing care for their patients including:

• Limited time to do work outside of clinic appointments
• Difficulty getting patients access to prescribed treatments
• Program evaluations that only focus on number of visits
• Obstacles to managing clinic operations
• Challenges providing equitable care to diverse communities

Learn More and Make Your Voice Heard

As the organization develops its next strategic plan, the results from these surveys will help guide the Foundation’s priorities for 2026 through 2030.

Centering the CF community’s needs is our most important task as we develop this plan. One of the most common themes we heard was summed up well by one respondent who said, “In addition to the search for a cure, the CF Foundation should continue to pursue research that affects the daily realities of people living with CF.”

For a more detailed look into the CF community’s survey responses and to hear more direct insights, visit the strategic plan survey results page.

The Foundation continues to seek insights from the CF community related to its efforts and their personal experiences. Community members can inform the Foundation’s work and impact CF research, care, and programs by joining Community Voice and engaging with local chapters. To stay up to date on the Foundation’s efforts, sign up to receive updates.