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Cystic Fibrosis Foundation

EIN 13-1930701 · Bethesda, MD

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthGood78 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

SEE SCHEDULE O

Income
$355.8 million
Spending
$439.1 million
Spent on programs
79%
Reserves
Over 10 years of spending
Largest source of income
investment income, 65%
Employees
875
Volunteers
56,403
Highest pay
$1.9 million, chief investment officer

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 78 out of 100. Higher than 69% of charities in its peer group (diseases, over $100m).

  • Reserves

    35 of 35

    Spendable reserves would cover more than ten years of spending.

  • Debt

    20 of 20

    It owes 6% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 23% of income.

  • Income trend

    15 of 15

    Income rose 22% on the year before.

  • Spending floor

    8 of 15

    79% of spending went to programs and raising each dollar of donations cost 37 cents.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100. Higher than 33% of charities in its peer group (diseases, over $100m).

  • Independent board

    25 of 25

    16 of 17 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $306.4 million spent. MEDICAL AND RESEARCH PROGRAMS - THE CF FOUNDATION IS THE WORLD'S LEADER IN THE SEARCH FOR A CURE FOR CF, A PROGRESSIVE, GENETIC DISEASE THAT AFFECTS APPROXIMATELY 40,000 PEOPLE IN THE UNITED STATES, AND MORE THAN 100,000 WORLDWIDE, FROM ANY BACKGROUND. THE CF FOUNDATION ANNUALY FUNDS OVER $250 MILLION IN RESEARCH TO HELP DISCOVER AND DEVELOP EFFECTIVE CF THERAPIES, LEARN MORE ABOUT THE SCIENCE OF CF, AND PROMOTE HIGHLY SPECIALIZED CARE. DUE IN PART TO THE CF FOUNDATION'S EFFORTS, THE AVERAGE LIFE EXPECTANCY OF PEOPLE BORN TODAY WITH CF IS NOW MORE THAN 60 YEARS OF AGE, MORE THAN DOUBLE WHAT IT WAS IN 2000. THE CF FOUNDATION FUNDS DISCOVERY AND DEVELOPMENT RESEARCH CONDUCTED BY BIOTECHNOLOGY AND PHARMACEUTICAL COMPANIES AND ACADEMIC RESEARCH CENTERS. THE CF FOUNDATION DRUG DEVELOPMENT PIPELINE HAS DOZENS OF THERAPIES IN DEVELOPMENT INCLUDING TREATMENTS THAT ADDRESS COMPLICATIONS, LIKE INFECTIONS, AND GENETIC THERAPIES THAT COULD ONE DAY LEAD TO A CURE FOR ALL PEOPLE WITH CF, INCLUDING THOSE WITH RARE AND NONSENSE DISEASE-CAUSING MUTATIONS. THE CF FOUNDATION THERAPEUTICS LAB HELPS EXPEDITE THE EARLY STAGES OF DRUG DISCOVERY THAT COULD CORRECT OR IMPROVE THE FUNCTION OF THE DEFECTIVE CYSTIC FIBROSIS TRANSMEMBRANE CONDUCTANCE REGULATOR (CFTR) PROTEIN. THE LAB BRIDGES THE GAP BETWEEN DISCOVERIES MADE AT ACADEMIC INSTITUTIONS AND THE DEVELOPMENT OF NEW MEDICATIONS BY THE PHARMACEUTICAL INDUSTRY. TO SUPPORT ITS MISSION, THE CF FOUNDATION ALSO FUNDS AND ACCREDITS A NATIONWIDE NETWORK OF MORE THAN 100 CARE CENTERS AT HOSPITALS ACROSS THE COUNTRY. THIS NETWORK PROVIDES THE BEST CARE FOR PEOPLE WITH CF AND HAS BEEN RECOGNIZED BY THE NATIONAL INSTITUTES OF HEALTH AS A MODEL OF CARE FOR A CHRONIC DISEASE. IN 2024, THE FOUNDATION PROVIDED MORE THAN $45 MILLION IN FUNDING FOR CARE CENTERS AND CLINICIANS. THIS WORK INCLUDES DEVELOPING CARE GUIDELINES, FUNDING PROFESSIONAL DEVELOPMENT AWARDS, AND ADVANCING QUALITY IMPROVEMENT OF THE HIGHLY SPECIALIZED CARE NEEDED TO LIVE WITH THE DISEASE. THE CF FOUNDATION ALSO MANAGES A PATIENT REGISTRY OF MORE THAN 30,000 PEOPLE WITH CF. THIS INVALUABLE TOOL HELPS IDENTIFY NEW HEALTH TRENDS TO INFORM DEVELOPMENT OF EFFECTIVE TREATMENTS AND IMPROVEMENT OF QUALITY CF CARE. THE PATIENT REGISTRY IS AN INTERNATIONALLY RECOGNIZED MODEL FOR NONPROFIT HEALTH ORGANIZATIONS, INCLUDING OTHER CF ADVOCACY GROUPS.
  2. $22.2 million spent. PUBLIC AND PROFESSIONAL INFORMATION AND EDUCATION - TO SUPPORT ITS MISSION, THE CF FOUNDATION CREATED EDUCATIONAL CONTENT DESIGNED TO INFORM AND SUPPORT PEOPLE WITH CF AND THEIR FAMILIES, MEDICAL PROFESSIONALS, AND THE GENERAL PUBLIC ABOUT THE DISEASE THAT IS MADE AVAILABLE ON ITS WEBSITE AND SOCIAL MEDIA CHANNELS. EACH YEAR, MILLIONS VISIT THE CF FOUNDATION'S WEBSITE, WHICH IS REGULARLY UPDATED WITH A LARGE VOLUME OF ORIGINAL AND UPDATED CONTENT, INCLUDING NEWS STORIES, EDUCATIONAL PAGES, VIDEOS, AND COMMUNITY BLOG POSTS. YEAR-ROUND MEETINGS AND CONFERENCES PROVIDE UPDATES FOR CF RESEARCHERS, PHYSICIANS, AND ALLIED HEALTH PROFESSIONALS AND CREATE OPPORTUNITIES FOR COLLABORATION ON FUTURE CF RESEARCH PROJECTS AND TREATMENT/CARE EFFORTS.
  3. $18.2 million spent. COMMUNITY SERVICES - THE CF FOUNDATION PROVIDES SUPPORT FOR PEOPLE WITH CF AND THEIR FAMILIES AS THEY MANAGE THE PHYSICAL, EMOTIONAL, AND FINANCIAL CHALLENGES OF LIVING WITH CF. THIS IS ACHIEVED BY SUPPORTING HIGH QUALITY, SPECIALIZED CARE, OFFERING RESOURCES AND TOOLS TO HELP PEOPLE DIRECT THEIR OWN CARE, AND DEVELOPING PROGRAMS TO HELP PEOPLE WITH CF AND THEIR LOVED ONES CONNECT, LEARN FROM ONE ANOTHER, AND CELEBRATE THEIR JOURNEYS TOGETHER. LACK OF ADEQUATE INSURANCE COVERAGE FOR CF THERAPIES HAS BEEN A CONSISTENT CONCERN FOR THOSE LIVING WITH THE DISEASE AND THEIR FAMILIES. THE CF FOUNDATION'S COMPASS PROGRAM IS A HIGHLY PERSONALIZED SERVICE THAT HELPS PEOPLE LIVING WITH CF AND THEIR FAMILIES NAVIGATE CHALLENGES RELATED TO COMPLEX INSURANCE, FINANCIAL, LEGAL, AND OTHER ISSUES THAT CAN PREVENT ACCESS TO CF THERAPIES AND CARE. IN 2024, SKILLED COMPASS CASE MANAGERS RESPONDED TO MORE THAN 6,000 INQUIRIES FROM PEOPLE WITH CF, THEIR FAMILIES, AND THEIR HEALTHCARE PROVIDERS, ASSISTING THEM WITH UNDERSTANDING AND MAXIMIZING THEIR INSURANCE COVERAGE AND BENEFITS, AS WELL AS OFFERING SUPPORT FOR OTHER ASPECTS OF DAILY LIFE WITH CF. CASE MANAGERS ALSO HELPED CONNECT INDIVIDUALS WITH CF TO RESOURCES FOR CHALLENGES RELATED TO LIFE WITH CF THAT CAN AFFECT ACCESS, INCLUDING BASIC LIVING AND FOOD EXPENSES. THROUGH THESE EFFORTS, THE CF FOUNDATION SAVED CLIENTS MORE THAN $3 MILLION IN 2024. THE CF FOUNDATION TYPICALLY HOSTS MORE THAN 1,000 NATIONAL AND CHAPTER EVENTS ANNUALLY FOR PEOPLE WITH CF, THEIR FAMILY MEMBERS, AND VOLUNTEERS. VIRTUAL EVENTS, INCLUDING BREATHECON, RESEARCHCON, AND ROSEUP, WERE DESIGNED BY AND FOR ADULTS WITH CF, THEIR FAMILIES, CLINICIANS, AND RESEARCHERS AS A WAY FOR THE CF COMMUNITY TO CONNECT, SHARE, AND LEARN FROM PEERS THROUGH OPEN AND HONEST DIALOGUE.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2024.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since November 1957.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.