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.
Many people with CF choose surrogacy or gestational carriers as a family building option. By learning more about surrogacy and its potential challenges, you can ultimately assess whether it is right for you.
Traditional surrogacy refers to the process in which the surrogate provides her own eggs and undergoes in-vitro fertilization (IVF) or intrauterine insemination (IUI) with sperm from the intended male parent or a sperm donor. Therefore, the traditional surrogate is genetically related to the child she is carrying.
Gestational surrogacy, on the other hand, is when the eggs and sperm come from the intended parents to create an embryo through IVF, which is then placed in the uterus of the gestational carrier. Due to legal issues, the majority of surrogacy in the United States involves the use of a gestational carrier.
When it comes to finding a gestational surrogate, most people go through a full-service agency that matches the intended parents with potential carriers. It is important to choose an agency that offers adequate screening, clearly defined fees, and a reputable history. For a list of questions to ask surrogacy programs, go to familybuilding.resolve.org. You can also ask to speak to the agency’s former clients so you can get a better idea of how the process will work.
Due to the cost, some couples choose to sidestep the agency and search for a surrogate independently. In these cases, it is important that both you and your surrogate find legal counsel before making any arrangements, and develop a contract that clearly
defines your expectations. In addition, it is important to get background information on your surrogate to ensure that she is the right person to carry your child.
In some cases, a family member or friend will offer to be a surrogate, which can help greatly reduce the cost of surrogacy by eliminating the need for an agency. However, most people will need to find a surrogate either through an agency or on their own.
“When I was first considering surrogacy, it seemed so inaccessible to me. But learning that the first step is to go and make an appointment at a fertility clinic helped me understand where to begin and just find information.” -- Kristin Dunn, adult with CF
After you have completed initial fertility
counseling and identified a surrogate, you, your surrogate, and your partner or spouse (if applicable) will undergo medical,
financial, and psychological evaluations to ensure that surrogacy is right for you.
Once you have been screened, you will then need to find legal representation for both yourself and your surrogate so that you can sign a legal agreement. It is important that you hire an attorney with experience in surrogacy who can help you create an in-depth document that addresses key
concerns such as parental rights, custody, where the baby will be delivered, the behavior of the surrogate during pregnancy, medical decisions, and surrogate compensation.
In addition to the
emotional and psychological aspects involved in surrogacy, there are many other factors that you need to consider before you decide if it is the right family building option for you.
One of the greatest challenges involved in surrogacy is the issue of legality. The laws surrounding surrogacy and gestational carriers are either non-existent or differ by state, so it is important to find an attorney with experience in your state’s reproductive law.
For example, some states do not allow for a declaration of parentage prior to the birth of the child. This means that you and your partner may not be able to have your names listed on your child’s birth certificate and, therefore, may need to formally adopt the baby once it is born.
Learn more information about the
legal aspects surrounding gestational surrogacy.
Although fees and expenses vary depending on factors such as if you use a donor or go through a private agency, using a surrogate is
an extremely expensive process. The intended parents will be responsible for financially compensating the surrogate and covering any legal fees, travel expenses, screenings, psychological evaluations, medical expenses, maternity clothes, and any other baby-related
costs that might arise. For this reason, it is important that you are financially prepared before pursuing surrogacy as a family building option.
health insurance companies will cover surrogacy, most private insurance policies do not. You can always purchase a health insurance plan that does cover surrogacy, but it is important to understand that this will be an added expense. If your health
insurance does happen to cover surrogacy, it is possible that you will pay little to no costs related to the maternity, labor, and delivery of the baby. For those who are not covered by insurance, you can always speak with your legal representative or ask your fertility center if they offer any in-house
financing, payment plans, or cash discounts.
“I had to get a letter of medical necessity saying I shouldn’t carry a child and submit it to my insurance company. My fertility clinic told me that implantation was covered by my plan, so I assumed that all other costs would fall on my husband and me. It turns out that my
insurance actually covered me all the way through the delivery. If I could do it again, I would have directly contacted my insurance company, worked with them to understand my coverage and approvals, and asked for advice on exactly how to best submit claims." -- Kristin Dunn, adult with CF
Cystic Fibrosis Foundation
Compass can also help by connecting you to resources for the cost of surrogacy and other financial barriers. Call 844-COMPASS (844-266-7277) Monday through Friday, 9 a.m. until 7 p.m. ET, or email
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