Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
Learn more about our Board and Officer Conflict of Interest Policy.
The following statement of policy (the “Policy”) applies to (i) each Trustee (“Trustee”) of the Cystic Fibrosis Foundation Board of Trustees (the “Board”), (ii) to all individuals elected as advisors to the Board (“Advisors”), (iii) to all corporate officers (“Officers”) of the Cystic Fibrosis Foundation and its controlled affiliates, if any, (collectively, the “Foundation”) and (iv) all directors of such affiliate. All directors of such affiliate who are not Officers of the Foundation shall be subject to the same requirements as Trustees under this policy.
Trustees, Advisors and Officers of the Foundation serve the public trust and have an obligation to fulfill their responsibilities in a manner consistent with this fact.
All decisions of the Board, Advisors and Officers of the Foundation must be made solely on the basis of an unquestioned desire to promote the best interests of the Foundation and the public good without the taint of actual or potential conflicts of interest.
The Foundation's integrity must be protected and advanced at all times. Therefore, employees, consultants or directors of biotechnology and pharmaceutical companies where a material focus is on cystic fibrosis may not serve in a voting capacity on the Board. In the event that the preceding becomes relevant for a Trustee, the procedures in section 5 below would apply.
The Foundation recognizes that Trustees, Advisors and Officers of the Foundation could have other potential conflicts of interest with the Foundation. Although potential conflicts may be inconsequential, it is everyone's responsibility to ensure that the Board is made aware of situations that involve personal, familial or Commercial Relationships (as defined below) that could encumber the independence or the ability of Trustees, Advisors or Officers to act in the best interests of the Foundation without conflict of interest.
Thus, the Board annually requires each Trustee, Advisor and Officer of the Foundation (1) to review this Policy; (2) to disclose any potential personal, familial, or Commercial Relationships that reasonably could give rise to a conflict of interest involving the Foundation; and (3) to acknowledge by his or her signature that he or she is in compliance with the letter and intent of this Policy.
All Trustees Advisors, and Officers of the Foundation are requested to list on this form those Commercial Relationships that he or she (or a Family Member) maintain with organizations that (1) do business with the Foundation, (2) are engaged in work concerning cystic fibrosis or (3) otherwise could be construed potentially to affect his or her independent, unbiased judgment in light of his or her decision-making authority or responsibility. These disclosures are to be made annually upon distribution of this form by the Foundation as well as at any time during the year that an issue requiring disclosure arises.
Information provided on this form, may be disclosed to the Governance Committee, the Board and their legal counsel for evaluation in accordance with the Foundation's Bylaws. Such information shall otherwise be kept as confidential and shall not be disclosed to other parties except as required by law.
The following definitions are provided to help you decide whether a “Commercial Relationship” should be listed on this form, who constitutes a “Family Member”, and what constitutes holding an “Indirect” interest.
For each Commercial Relationship that is disclosed with an entity, the Foundation shall, upon the request of the Governance Committee Chair, identify all business relationships and all conflicting or competing interests it has with such entity and disclose these relationships and interests to the Governance Committee and the Board to evaluate the significance of such business relationships and interests to the Foundation and to the entity as part of the effort to determine whether such Commercial Relationship creates a conflict of interest under this policy and the Foundation's Bylaws.
Pursuant to Article II, Section VI of the Foundation's Bylaws, when any conflict of interest is relevant to a matter requiring action by the Board, the interested Trustee, Advisor or Officer shall retire from the room in which the Board or its committee is meeting, shall not participate in deliberation of the matter, and shall not vote on the matter. When there is a doubt as to whether a conflict of interest exists, the matter shall be resolved pursuant to Article II, Section VI of the Foundation's Bylaws. In addition, when the Foundation or an affiliate has a significant and continuous business relationship (e.g., receipt by the Foundation or its affiliate of substantial royalty payments) over an extended period with an entity with which a Trustee, Advisor, Officer or Family Member has a Commercial Relationship that may result in an appearance of conflict, such Commercial Relationship may disqualify such Trustee, Advisor or Officer from serving on or advising the Board or continuing as an Officer of the Foundation, as the case may be, regardless of whether an actual conflict of interest exists, unless the Trustee, Advisor, Officer or Family Member agrees to dispose of or terminate such Commercial Relationship. Removal of a Trustee, Advisor or Officer pursuant to the proceeding sentence shall be in accordance with Article 2, Section IV and/or Article 3, Section X of the Foundation's Bylaws, as the case may be.
It is anticipated that Trustees, Advisors and Officers will, in connection with their service to the Foundation, learn about certain confidential information with respect to the Foundation and third parties with which the Foundation does business. Each Trustee, Advisor and Officer agrees and acknowledges that he or she will not disclose any such confidential information to a third party in accordance with the Non-Disclosure Agreement signed by such Trustee, Advisor or Officer.
Cystic Fibrosis Foundation, Conflict of Interest Policy and Disclosure Form for Board Trustees, Advisors and Officers, Rev. 11/12/2020
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Cystic Fibrosis Foundation
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