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.
By learning more about the pros and cons of adoption for a person with cystic fibrosis, you can ultimately decide if it is the right family building option for you.
For people with cystic fibrosis who have ruled out pregnancy, have a partner who is a CF carrier, or have simply always wanted to pursue adoption as a family planning option, adoption can be a great way to have kids and build a family. At the same time, however, it can also be an emotionally and financially demanding process that requires the prospective parents to navigate complex regulations and procedures.
For this reason, it is important to gather as much information as possible before you decide to start the adoption process. Many states offer or require training sessions to help families learn more about adopting a child. You can also get information from agencies, attorneys, support groups, mental health professionals, adoption organizations, seminars, your CF care team, and friends and family.
By understanding the different types of adoption and learning more about the pros and cons, you can ultimately decide whether adoption is the right family building option for you.
The first step toward adopting a child is learning more about the different types of adoption available to you. This includes considerations such as open versus closed adoption, agency versus private adoption, and country of origin.
Open adoption refers to any adoption in which identifiable information and contact is shared between the adoptive family and birth parents, with varying degrees of interaction between the two parties. Closed adoptions, on the other hand, are adoptions in which there is no contact between the adoptive family and birth parents, and no identifying information is provided.
Although closed adoptions used to be the norm, the majority of domestic adoptions in the United States today are open adoptions. This differs from most international adoptions in which there is often little to no information available about the birth parents or their history.
Depending on which state you live in, one of the most important choices you will make as you go through the adoption process is whether to use an agency. Adoption agencies take the prospective parents through every step of the process, including providing a social worker to perform a home study, connecting birth parents with adoptive parents, handling the termination of parental rights, and finding an attorney. It should be noted that having cystic fibrosis should not negatively affect you if you decide to adopt through an agency.
“I asked the adoption agency if having CF would play a role in my wife and I getting a child. The agency was understanding and said, 'How can we predict health? Another woman from another family could adopt a child tomorrow and get breast cancer the next day.'” -- Sarah Foose, adult with CF
Independent adoptions, on the other hand, are when the prospective parents deal with the birth mother directly and work closely with an attorney or other intermediaries as allowed by state law. Independent adoption is not legal in all states, however, so reading up on the laws in your state is key as you begin to narrow down your options.
Agency adoption is typically more expensive than independent adoption, but it can also offer more counseling and support. Although independent adoptions are often cheaper, they can also take longer and require the prospective parents to initiate and navigate a complicated, labor-intensive process. Therefore, your decision will often come down to financials, your personal preferences, and the laws in your state.
“For my first son, my husband and I decided to do everything ourselves without an agency. For my second son, however, we had saved enough money to the point where we decided to just bite the bullet and go through an agency. As opposed to the year or so it took to look for our first son on our own, the agency was able to match us within the first few months.” -- Annie Hirsch, adult with CF
Foster care can be another popular option for people who are interested in growing their families. Learn more about foster care and becoming a foster parent.
Adoption laws differ by state and country. If you decide to adopt domestically and go across state lines, for example, you will need to comply with the laws in both states before you can formally adopt the child. Each state has legislation in place called the Interstate Compact for the Placement of Children that dictates the exact rules for placing children across state lines.
For those who decide to adopt internationally, there will be an entirely different set of rules, policies, procedures, regulations, laws, and cultural issues specific to the country you are considering. For this reason, it is crucial that adoptive parents work closely with an attorney experienced in adoption law and the emotional complications it entails -- especially if you decide to adopt without using an agency.
In addition to the rules, regulations, and legalities involved, adoption is also an emotionally and psychologically difficult process with many uncertainties. For this reason, it is important that you establish a support system that can help you navigate through the emotional aspects.
Although the cost will vary depending on factors such as if you go through a private agency or adopt domestically or internationally, adoption is generally an expensive process and can come as a significant financial burden to the prospective parents.
Cystic Fibrosis Foundation Compass can help you find resources for the cost of adoption, other financial barriers, and legal information. Call 844-COMPASS (844-266-7277) Monday through Friday, 9 a.m. until 7 p.m. ET, or email firstname.lastname@example.org.
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