Our Strategic Plan

A Message From Our CEO

The CF Foundation's Strategic Plan for 2020-2024 defines key areas of focus for the next five years as we advance our path to a cure, meet emerging challenges in care, and explore new ways to partner with and support the CF community.

Hundreds of people with CF and their circles of support, as well as leading clinicians and researchers, helped to shape this vision. Together, we reflected on the last six decades of progress in CF and what those advances mean for people with CF. We also considered how the needs of people with CF and those who care for them will change in the coming years as the treatment landscape continues to evolve.

In this video, Mike Boyle, President and CEO of the CF Foundation, sets out our road ahead and expresses gratitude to the individuals who have joined us on the journey to make CF stand for Cure Found.

Our Strategic Plan: Cure

As we set our sights on the future, we continue to aggressively pursue a cure for all people with CF. We also recognize that many individuals with CF need better treatments for the serious manifestations of their disease today, and we are committed to advancing new therapies as quickly as possible. We will leverage our successful model for collaborative drug discovery and development to bring the best scientific minds and technology into CF research and catalyze the next generation of transformative CF therapies.

Key Area of Focus: Treat the underlying cause of CF for all people with the disease and drive progress toward a cure

Establish the necessary tools and knowledge to enable researchers to evaluate genetic-based therapies that may have clinical impact for people with CF

  • Draw innovators who are advancing promising genetic technologies into CF research and establish the tools and infrastructure necessary to accelerate their work
  • Develop and optimize research models to help understand which genetic-based therapies are most likely to have clinical impact for people with CF
  • Evolve our research funding and collaboration models to work most effectively with industry

Advance therapies that address the underlying cause of CF for individuals with nonsense and rare mutations

  • Identify strategies and potential therapies to address nonsense and rare mutations
  • Identify and develop better preclinical models to predict which potential therapies will work in people with nonsense and rare mutations

Support the availability of novel CFTR modulator therapies and combinations to ensure that people with CF have robust treatment options

  • Advocate for the approval of modulator therapies for as many mutations as possible, and at the earliest ages, as quickly as possible
  • Foster the involvement of multiple companies in the development of novel modulator therapies

Key Area of Focus: Advance new and improved treatments to address the many manifestations of CF, including challenges associated with advanced disease

Improve outcomes of infections for people with CF

  • Advance therapies for CF infections, focusing on novel approaches and difficult-to-treat organisms
  • Improve detection and diagnosis of a broad range of CF-related infections

Advance approaches to prevent and treat serious manifestations of CF outside the lungs

  • Encourage research and collaboration to better understand the underlying causes of GI symptoms and nutritional issues
  • Build on and apply existing research in CF liver disease to improve diagnosis and management
  • Fund research to understand the underlying cause of CF-related diabetes and advance novel treatment approaches
  • Apply effective therapies and best practices from general endocrinology practice to better understand and improve treatment of CF

Improve understanding of chronic rejection following lung transplant with the goal of developing a prevention or treatment

  • Improve understanding of the manifestations of chronic rejection following lung transplant and how they are associated with patient outcomes
  • Identify and implement creative approaches to address or prevent chronic rejection following lung transplant

Improve understanding of inflammation, impaired airway hydration, and mucus clearance to advance new therapies for CF

  • Facilitate new and in-progress research to inform new therapies targeting inflammation, mucus clearance, and airway hydration
  • Understand what limits mucus clearance in CF and develop therapies that correct those defects
Our Strategic Plan: Care

High-quality, comprehensive care has added decades of life for people with CF. We will apply the principles of our pioneering care model -- including its multidisciplinary approach, emphasis on data and evidence, and focus on continuous improvement, treating the whole person, and access to care -- to optimize health for people with CF as individuals experience the disease differently and modulators continue to transform the CF treatment landscape.

Key Area of Focus: Support the best possible CF treatment and care delivery by generating high-quality data and evidence

Evolve the CF Foundation Patient Registry to ensure it is capturing what matters most to people with CF and their care teams as they make decisions about care

  • Enhance the CF patient registry to better understand the disease at all stages of the CF journey
  • Incorporate new technology and other data sources (e.g., patient-reported outcomes, pharmacy data) to paint a more complete picture of life with CF today
  • Enhance use of population- and individual-level data by clinicians and people with CF

Characterize the best CF care and treatment regimens to provide optimal, individualized care as the CF treatment landscape evolves

  • Describe how modulator therapy impacts clinical outcomes
  • Support and conduct research on the best care regimens for people with CF in the era of highly effective modulators, including the impact of starting or stopping existing therapies
  • Develop a clinical research program to understand the impact of CF therapies when used in real life, outside the parameters of a controlled clinical trial
  • Use the Registry and other sources of clinical data to inform and advance best practices for later-stage manifestations of CF

Improve understanding of system-level and societal barriers to optimal CF care and explore opportunities to minimize their effect

  • Help optimize mental health and emotional wellness services for people with CF
  • Understand the impact of social determinants of health and explore opportunities to minimize their effect on optimal CF care
  • Engage payers and policymakers to help ensure people with CF have access to high-quality, specialized care

Key Area of Focus: Evolve and support the CF care model and network

Ensure that the CF care model adapts to meet the future needs of people with CF across their lifespan

  • Evaluate innovative ways and potential collaborations to sustain the care model and deliver care more efficiently and effectively
  • Strengthen the business case for high-quality, specialized CF care to ensure it remains a valued part of the health system

Sustain a culture of continuous learning and improvement in care across the CF community

  • Promote continuous quality improvement across the care center network through enhanced training, learning networks, and collaborations
  • Streamline the development, sharing, and implementation of best practices among care teams, people with CF, and their families

Ensure that leading clinicians and researchers across a variety of disciplines continue to focus on CF and are equipped to address the changing health care needs of people with CF

  • Expand and enhance professional recruitment and development opportunities for care center leadership, clinicians, researchers, trainees, and staff
  • Support the availability of essential multidisciplinary and specialty services for people with CF regardless of geography or other barriers
  • Enhance care teams' ability to provide individualized support for people with CF and their families that helps them adhere to their treatment regimens and manage their everyday care
Our Strategic Plan: Community

Today, the number of adults with cystic fibrosis exceeds the number of children, bringing new power and energy to our mission as the CF community shapes our priorities and pushes us forward. We are seeking new and meaningful ways to engage the CF community and to become a place where all people with CF and their circles of support feel welcomed. We will continue to champion people with CF in all that we do -- enhancing our support for life with CF and expanding the reach of our programs and services to those in need.

Key Area of Focus: Support people with CF in living their best possible life no matter where they are on their CF journey

Empower people with CF, their families, and their support networks with the knowledge, skills, and confidence to direct their health

  • Deliver trusted, tailored information to help people with CF, their families, and circles of support understand and manage their health
  • Understand barriers to managing everyday care, and create resources to help people with CF and their families guide decisions about their treatment and care in collaboration with their care teams

Provide support to people with CF as they navigate the complexities of daily life with CF

  • Enhance programs that support individuals in overcoming practical challenges related to accessing care and living with CF

Enhance the lives of people with CF through a greater emphasis on physical and mental wellness

  • Foster opportunities for people with CF, and their families and support networks to develop meaningful connections within the CF community
  • Facilitate the availability of resources that promote physical and mental wellness

Key Area of Focus: Engage CF community members as essential partners in our mission

Energize the CF community to stimulate fundraising to generate the financial resources necessary to achieve our mission

  • Expand our model of fundraising and community engagement to ensure that individuals have the opportunity to support our mission in the ways that are most meaningful to them
  • Educate the CF community, and the broader public, on the value the Foundation provides and the vital need for additional funds to continue our work

Engage CF community members to help inform, shape, and advance Foundation programs and priorities

  • Ensure that our programs reflect the evolving needs of people with CF, their families, and their circles of support
  • Improve mechanisms to recognize community members for their individual and collective contributions and acknowledge their impact

Key Area of Focus: Expand the reach of programs and services to benefit more individuals across the CF community

Provide services and engagement opportunities to more members of the CF community

  • Raise awareness of and improve access to CF Foundation programs and services
  • Improve information sharing across Foundation programs to drive a comprehensive view of the community's needs and delivery of integrated programs and services

Collaborate with care centers and engage other external organizations to amplify our efforts to address community needs

  • Enhance our understanding of how chapters and national Foundation programs can help care centers address the challenges their patients face
  • Collaborate with other organizations to mutually leverage our strengths and maximize our collective impact
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