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Cystic Fibrosis

We specialise in carrier screening to identify carriers of cystic fibrosis. We can also provide NIPT options to look at the risk of Cystic Fibrosis during pregnancy. 

We provide a second opinion ultrasound on findings associated with cystic fibrosis.

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Cystic Fibrosis: Key Information

Cystic fibrosis (CF) is a genetic condition that primarily affects the lungs and digestive system, leading to the production of thick, sticky mucus. This mucus can block airways and trap bacteria, resulting in frequent lung infections, difficulty breathing, and progressive lung damage. CF is caused by mutations in the CFTR gene, which regulates salt and water movement in and out of cells. Along with lung complications, people with cystic fibrosis often experience digestive issues due to mucus blocking the pancreas, which can interfere with nutrient absorption and cause malnutrition.

In the past, the main diagnostic tools for CF were Chorionic villus sampling (CVS) and Amniocentesis. Both are invasive tests and carry a risk of miscarriage. More recently, with the advancements of NIPT, more reliable non-insvasive screening for the condition during pregnancy. Additionally, couples planning a pregnancy can opt for pre-conception genetic screening to determine if they are carriers of the CFTR mutation. If both partners are carriers, they have a 1 in 4 chance of having a child with cystic fibrosis. These early diagnostic options allow parents to make informed decisions about their pregnancy and care.

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Carrier screening diagram, by London Pregnancy Clinic, showing the chances of passing on cystic fibrosis if both parents are healthy carriers, with 25% chance of child having CF, 50% chance of child being a carrier, and 25% chance of child not inheriting CF.

Carrier Screening can detect faulty CFTR genes

Cystic Fibrosis statistics

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Cystic Fibrosis: What assistance can we provide?

Pre Pregnancy Genetic Counselling

Pre-pregnancy genetic counselling is an invaluable resource for individuals who are carriers of cystic fibrosis (CF). Carriers of CF possess one copy of the mutated gene responsible for the condition, but they do not exhibit symptoms themselves. However, if both partners are carriers, there is a 25% chance that their child will inherit two mutated genes and develop cystic fibrosis. Genetic counselling provides CF carriers with detailed information about the risk of passing the condition onto their offspring, allowing them to make informed reproductive decisions.

During genetic counselling, couples can explore various options such as pre-implantation genetic diagnosis (PGD), in-vitro fertilisation (IVF), or prenatal testing like NIPT, amniocentesis or chorionic villus sampling (CVS). These options can help detect whether a fetus is affected by cystic fibrosis early in the pregnancy or even prior to conception. Counsellors also provide emotional support and guidance, helping couples weigh the benefits and risks of each option based on their family goals and personal values. By understanding their genetic risk, CF carriers can better plan for a healthy pregnancy and prepare for any potential outcomes.

Preconception Carrier Screening

Preconception carrier screening is a genetic test that helps individuals or couples determine if they are carriers of certain inherited conditions, including cystic fibrosis (CF). This test works by analysing a blood or saliva sample to check for mutations in specific genes, such as the CFTR gene responsible for CF. If both partners are carriers of the cystic fibrosis gene mutation, there is a 25% chance that their child will inherit the condition. The screening is particularly important for those with a family history of CF or those in high-risk groups, helping to identify potential genetic risks before conception.

For cystic fibrosis carriers, preconception carrier screening can play a crucial role in pregnancy planning. If both partners are found to be carriers, they can explore options such as in-vitro fertilisation (IVF) with pre-implantation genetic diagnosis (PGD) to select embryos without the CF mutation, or they can opt for prenatal testing to determine whether a pregnancy is affected. Additionally, the screening helps couples prepare emotionally and financially for the possibility of having a child with cystic fibrosis, allowing them to make informed decisions about their reproductive options. Early awareness through carrier screening is key to helping couples plan a healthy pregnancy and manage genetic risks effectively.

NIPT: Non-invasive Testing option

NIPT traditionally screened for the 3 Trisomies – Down’s Syndrome, Patau’s Syndrome and Edward’s Syndrome. In recent years, the screening performance of NIPT for other conditions, including Cystic Fibrosis (CF) has significantly improved. More recently, tests such as Unity NIPT, KNOVA NIPT and PrenatalSafe Complete Plus, are also able to detect the carrier status of the parent for the condition, and distinguish the baby’s DNA to the mother’s DNA.

While NIPT accuracy is improving for various genetic conditions, it is important to note that it is a screening test rather than a diagnostic one. False positives and negatives are possible, our fetal medicine experts will discuss the implications of the test during your appointment and help you make an informed decision around the testing options. 

Scan and NIPT for Soft Markers

NIPT is the safest option in the case of Cystic Fibrosis-related findings.

Fetal ultrasound features linked to CF, referred to as soft markers or anatomical variants (see below), are minor physical characteristics occasionally spotted during prenatal scans. Though they aren’t structural anomalies, their presence may marginally elevate the statistical chance of CF. Yet, it’s essential to stress that these markers don’t confirm the diagnosis; they simply suggest a higher probability.

These indicators of CF are frequently observed during healthy pregnancies. While they might capture the attention of sonographers and doctors during ultrasound examinations, most pregnancies displaying these markers don’t yield babies with CF or any other genetic abnormalities.

When healthcare providers evaluate these findings concerning each pregnancy, they may contemplate additional testing tailored to specific risk factors and circumstances. Procedures such as chorionic villus sampling (CVS) or amniocentesis might be necessary to rule out CF.

Alternatively, although not diagnostic, NIPT can significantly diminish the likelihood of CF. At the London Pregnancy Clinic, we conduct a second opinion assessment of fetal ultrasound features and offer extensive NIPT options.

High chance NIPT: expert fetal scan

Early Fetal Echocardiography for High Risk NIPT results.

When a Non-Invasive Prenatal Test (NIPT) indicates a high probability of CF, various terms like ‘high chance’, ‘high risk’, or ‘detected’ are used by different providers. While these terms can be worrying, they typically suggest a high likelihood that the baby may have CF. However, it’s important to remember that NIPT, despite its high accuracy, is not a diagnostic test. This means there is still a chance that the baby might not be affected by the condition.

If your NIPT results show a high probability for CF, the next step recommended by medical professionals globally is to undergo an invasive diagnostic test, such as Chorionic Villus Sampling (CVS) or amniocentesis. These tests are crucial to confirm the NIPT findings, and we strongly advise them before making any decisions about the pregnancy. Skipping this confirmatory step could lead to unintended consequences, like terminating a normal pregnancy based on a false-positive NIPT result.

Arranging and waiting for CVS or amniocentesis can be a tough process, often taking time, with a further 2-3 working days needed for results. We understand that this waiting period can be particularly stressful for parents. During this time, many parents wish to learn as much as possible about their baby’s condition.

In these situations, a detailed ultrasound is invaluable in evaluating the baby’s physical condition. Early fetal echocardiography, which we offer, is especially helpful in ruling out major heart defects and other structural problems. At London Pregnancy Clinic, we are committed to supporting parents through these anxious times. We frequently provide same-day or next-day appointments for second-opinion scans, including early fetal echocardiography. We aim to provide you with a comprehensive fetal evaluation during these crucial moments in your pregnancy journey.

Scan for baby diagnosed with Cystic Fibrosis

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Cystic Fibrosis: counselling

Counselling regarding antenatal management and delivery options for pregnancies with Cystic Fibrosis.

A significant number of parents, upon receiving a positive diagnosis of Cystic Fibrosis through procedures like CVS or amniocentesis, choose to continue with the pregnancy. Others who have a high likelihood of Cystic Fibrosis as indicated by NIPT may opt not to undergo further testing due to the associated risk of miscarriage with invasive procedures. We fully support their decisions and aim to provide them with a supportive and smooth journey.

Pregnancies involving Cystic Fibrosis often encounter more complications compared to those with typical chromosomes. They are at risk of several complications both during pregnancy and after birth. Cystic fibrosis is a genetic disorder that affects the function of mucus-producing glands, leading to thick, sticky mucus that can cause blockages in the lungs, digestive system, and other organs. During pregnancy, the foetus may experience slower growth, potentially leading to intrauterine growth restriction (IUGR) and a low birth weight. Additionally, the thickened mucus can interfere with the foetal gastrointestinal system, particularly in the development of the bowel, which may lead to complications like meconium ileus, a bowel obstruction present at birth.

Addressing these complex issues requires specialised counselling and management plans for pregnancies diagnosed with cystic fibrosis or those with high suspicion of the condition. This involves a series of repeated scans to monitor the baby’s well-being, typically carried out through Fetal Medicine Units within the NHS.

For those seeking further information and guidance on the antenatal management of pregnancies affected by Cystic Fibrosis, as well as delivery options, our Fetal Medicine and Obstetrics consultant, Ms Diane Nzelu, is readily available to assist.

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Cystic Fibrosis ultrasound

Ultrasound scans can sometimes provide early clues for Cystic Fibrosis

Ultrasound signs of cystic fibrosis during pregnancy

Fetal anomalies linked to Cystic Fibrosis may include physical defects affecting different organs and systems. Common anomalies noticed in fetuses with cystic fibrosis might affect the bowel and gallbladder.

Fetal signs of Cystic Fibrosis called soft markers or anatomical variants, are minor physical features occasionally detected during prenatal scans. While they aren’t structural anomalies, their presence might slightly raise the statistical likelihood of Cystic Fibrosis. However, it’s crucial to emphasize that these markers don’t confirm the diagnosis; they simply hint at a higher probability. 

These signs of Cystic Fibrosis are common and are often observed in healthy pregnancies. While they might catch the attention of sonographers and doctors during ultrasound examinations.

When healthcare providers assess these findings in the context of the individual pregnancy they may consider additional testing tailored to specific risk factors and circumstances. Tests like NIPT, chorionic villus sampling (CVS), or amniocentesis may be needed to either lower the likelihood of cystic fibrosis or to conclusively rule it out.

Echogenic Bowel

Intestines abnormality

One of the most common signs associated with cystic fibrosis visible on an ultrasound is echogenic bowel. This refers to the bowel appearing unusually bright on the ultrasound scan, similar to how bone appears. An echogenic bowel can sometimes be linked to the thick, sticky mucus produced in cystic fibrosis, which can obstruct the intestines.

Meconium Ileus

bowel obstruction

Meconium ileus is a type of bowel obstruction that occurs when a baby’s first stool (meconium) becomes too thick and sticky, blocking the intestines. This condition is present in about 10-20% of babies with cystic fibrosis and can be seen on ultrasound as dilated bowel loops or fluid-filled cysts within the bowel.

Polyhydramnios

excess amniotic fluid

Polyhydramnios, or excess amniotic fluid, can sometimes be associated with cystic fibrosis due to complications with the baby’s swallowing and digestive systems. It is often linked to conditions like meconium ileus or other gastrointestinal obstructions that affect normal amniotic fluid circulation.

Absent or Dilated Gallbladder

Gallbladder abnormality

In some cases, the gallbladder may appear absent or abnormally dilated on an ultrasound in fetuses with cystic fibrosis. This can occur due to blockages or underdevelopment of the bile ducts, another potential complication of the disease.

Fetal Growth Restriction

Hydrops fetalis

While not specific to cystic fibrosis, fetal growth restriction (poor growth of the baby) can occasionally be seen in pregnancies affected by CF due to nutritional deficiencies and digestive issues related to the condition. This is sometimes detected on ultrasound when the baby’s weight is lower than expected for gestational age.

Intestinal Atresia

blockage or narrowing of intestines

Some babies with cystic fibrosis may develop intestinal atresia, which is a blockage or narrowing of part of the intestines. This condition can be caused by thickened meconium blocking the intestine, leading to underdevelopment of parts of the bowel.

Frequently Asked Questions

Your questions answered

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What is cystic fibrosis?

Cystic fibrosis (CF) is a genetic disorder that affects the body’s ability to regulate salt and water movement in and out of cells. This causes thick, sticky mucus to build up in the lungs, digestive system, and other organs, leading to breathing difficulties, infections, and digestive issues. CF is caused by mutations in the CFTR gene, which is responsible for maintaining the balance of salt and fluids in the body.

In the UK, cystic fibrosis is one of the most common life-threatening genetic conditions. Symptoms typically begin in early childhood and worsen over time, though treatments have improved significantly in recent decades, extending the life expectancy and quality of life for those living with CF. However, there is still no cure, and management involves regular treatments to control symptoms and prevent complications.

Read more in our Blog
What causes cystic fibrosis?

Cystic fibrosis is caused by mutations in the CFTR gene. This gene is responsible for producing a protein that regulates the movement of salt and water in and out of the cells. In people with cystic fibrosis, the faulty gene causes the body to produce thick and sticky mucus, primarily affecting the lungs and digestive system. These gene mutations must be inherited from both parents for a person to develop CF.

The most common mutation responsible for cystic fibrosis is known as ΔF508. If both parents carry a faulty CFTR gene, they have a 1 in 4 chance of passing on the condition to their child. Even if both parents are carriers, they may not show any symptoms themselves, which is why genetic screening is often recommended for those planning a family.

How is cystic fibrosis diagnosed?

Cystic fibrosis can be diagnosed through newborn screening, which is routinely offered to all babies in the UK. The test involves taking a small blood sample to check for the presence of the faulty CFTR gene and other related indicators. If the screening suggests CF, further tests like a sweat test or genetic testing are carried out to confirm the diagnosis.

In addition to newborn screening, prenatal testing methods like amniocentesis or chorionic villus sampling (CVS) can also diagnose cystic fibrosis before birth. These tests check for the CFTR gene mutation in the unborn baby, providing families with important information about potential care needs after birth.

What are the symptoms of cystic fibrosis?

Cystic fibrosis primarily affects the lungs and digestive system, leading to a wide range of symptoms. The most common symptoms include persistent coughing, frequent lung infections, and shortness of breath due to the build-up of thick mucus in the airways. Over time, lung function can decline, making breathing increasingly difficult and leading to chronic respiratory issues.

CF also affects the digestive system by blocking the pancreas, making it harder to digest food and absorb nutrients. This can cause poor growth, malnutrition, and fatty stools. Other symptoms may include salty-tasting skin, clubbing of the fingers and toes, and in men, infertility due to blockages in the reproductive tract.

How is cystic fibrosis inherited?

Cystic fibrosis is inherited in an autosomal recessive manner, meaning that a child must inherit two faulty copies of the CFTR gene (one from each parent) to develop the condition. If both parents carry one faulty gene, there is a 25% chance with each pregnancy that their child will have cystic fibrosis, a 50% chance that the child will be a carrier, and a 25% chance that the child will inherit two normal genes.

Being a carrier means having one normal CFTR gene and one faulty gene. Carriers typically do not show any symptoms of cystic fibrosis but can pass the gene mutation on to their children. In the UK, about 1 in 25 people are CF carriers.

What treatments are available for cystic fibrosis?

Cystic fibrosis treatments focus on managing symptoms and slowing disease progression, as there is currently no cure. Airway clearance techniques such as chest physiotherapy help loosen mucus in the lungs, making it easier to cough up. Inhaled medications, such as bronchodilators and mucus-thinning agents, are also commonly prescribed to improve lung function and reduce inflammation.

Advances in medication, including CFTR modulators, have revolutionised CF care by targeting the underlying genetic defect. Additionally, antibiotics are used to treat lung infections, and enzyme supplements help with digestion and nutrient absorption. Maintaining a high-calorie, nutrient-dense diet is also essential for people with CF to support their energy needs.

Can cystic fibrosis be cured?

Currently, there is no cure for cystic fibrosis, but significant advancements in treatment have greatly improved the outlook for people living with the condition. Research is ongoing, with gene therapy and new medications aiming to address the root cause of the disease. CFTR modulators, for example, help some people with specific mutations by improving the function of the faulty protein.

Despite the lack of a cure, early diagnosis and comprehensive treatment can help manage symptoms, reduce complications, and extend life expectancy. In recent years, the median life expectancy for people with CF in the UK has increased to over 50 years.

How does cystic fibrosis affect the lungs?

Cystic fibrosis affects the lungs by causing the buildup of thick, sticky mucus that can block airways and trap bacteria. This makes people with CF more prone to lung infections, such as pneumonia and bronchitis, which can lead to frequent hospitalisations. Over time, these infections cause inflammation and damage to lung tissue, resulting in progressive loss of lung function.

People with CF often experience symptoms like chronic coughing, wheezing, and shortness of breath. Daily airway clearance techniques, along with medications to thin mucus and fight infections, are crucial for maintaining lung health and preventing complications like bronchiectasis.

How does cystic fibrosis affect the digestive system?

Cystic fibrosis affects the digestive system by blocking the release of digestive enzymes from the pancreas, making it difficult for the body to break down food and absorb nutrients. This can lead to malnutrition, poor growth, and difficulty gaining weight. Many people with CF need to take pancreatic enzyme supplements with meals to aid digestion.

CF can also cause other digestive issues, including constipation, abdominal pain, and fatty stools (steatorrhea). Maintaining a high-calorie diet rich in fats and protein is essential to meet the increased energy needs of people with cystic fibrosis.

What is the life expectancy for people with cystic fibrosis?

Thanks to advances in treatments, the life expectancy for people with cystic fibrosis has significantly improved. In the UK, the median life expectancy for those with CF is now over 50 years. Many people with CF can live full, active lives into middle age, though the severity of symptoms can vary between individuals.

Early diagnosis, comprehensive care, and the use of CFTR modulators and other treatments have played a significant role in extending life expectancy. Regular monitoring and proactive management of complications, especially lung infections, are key to improving outcomes for people with cystic fibrosis.

Can cystic fibrosis be detected before birth?

Yes, cystic fibrosis can be detected before birth through prenatal testing. If both parents are known carriers of the faulty CFTR gene, they can opt for amniocentesis or chorionic villus sampling (CVS) during pregnancy to determine if their baby will have cystic fibrosis. These tests analyse a sample of amniotic fluid or placental tissue for the CFTR gene mutation.

Additionally, couples planning a pregnancy can undergo pre-conception genetic screening to determine if they are carriers of the CFTR mutation. This allows them to understand the potential risks before conception and make informed decisions about family planning.

What are the risks of cystic fibrosis during pregnancy?

For women with cystic fibrosis, pregnancy can carry certain risks, especially if their lung function is severely compromised. The extra strain pregnancy places on the lungs and heart can lead to breathing difficulties, low oxygen levels, and a higher risk of complications like preterm birth or low birth weight.

However, with careful medical supervision, many women with CF can have successful pregnancies. Regular monitoring by a specialist team, adjustments to medications, and maintaining good nutritional status are essential for ensuring both maternal and foetal health.

How is cystic fibrosis managed on a daily basis?

Daily management of cystic fibrosis typically involves airway clearance techniques, such as chest physiotherapy, to help remove mucus from the lungs. Inhaled medications, like bronchodilators and mucolytics, are used to improve breathing and reduce mucus build-up. Antibiotics are frequently prescribed to prevent or treat lung infections.

Dietary management is also key. People with CF often require a high-calorie diet, along with pancreatic enzyme supplements, to help with digestion. Exercise is encouraged as it helps to keep the lungs clear and maintain overall health. Regular check-ups with a CF care team are essential for monitoring the condition and adjusting treatments as needed.

Can people with cystic fibrosis work and attend school?

Yes, people with cystic fibrosis can work and attend school, though they may require accommodations due to their medical needs. Many people with CF lead full, active lives and pursue careers, though managing the condition requires regular treatments and medical appointments. It’s important to communicate with employers and schools about any specific needs or adjustments.

Maintaining a balance between treatment, rest, and work or study is key. Many with CF may experience periods of illness that require time off, but with supportive environments, people with cystic fibrosis can achieve their personal and professional goals.

Can cystic fibrosis be treated with a lung transplant?

In cases of severe lung disease caused by cystic fibrosis, a lung transplant may be considered as a treatment option. This is typically recommended for individuals whose lung function has significantly deteriorated, and other treatments are no longer effective. A transplant can improve quality of life and extend life expectancy, but it is not a cure for CF, as the underlying condition still affects other organs.

A lung transplant carries risks, including rejection and infection, and lifelong medications are required to suppress the immune system. However, for many people with end-stage CF lung disease, it can offer a second chance at life.

How does cystic fibrosis affect fertility?

Cystic fibrosis can affect fertility, especially in men. Over 95% of men with CF are infertile due to a condition called congenital bilateral absence of the vas deferens (CBAVD), where the tubes that carry sperm are either blocked or missing. However, assisted reproductive technologies, such as IVF, can help many men with CF father biological children.

In women with CF, fertility is generally not as severely impacted, though thicker cervical mucus and respiratory health can make conception more challenging. With good health management and medical assistance, many women with CF can conceive and have successful pregnancies.

Is cystic fibrosis contagious?

No, cystic fibrosis is not contagious. It is a genetic disorder that is passed down from parents to their children through mutations in the CFTR gene. Only individuals who inherit two faulty copies of the gene (one from each parent) will develop the condition.

However, people with CF are more susceptible to lung infections, which can be caused by bacteria that may be contagious. Therefore, those with CF often need to take extra precautions to avoid close contact with others who have CF or certain respiratory infections.

What is newborn screening for cystic fibrosis?

In the UK, newborn screening for cystic fibrosis is part of the routine heel-prick test performed on all babies within the first few days of life. This test checks for the presence of the faulty CFTR gene and other markers that may indicate CF. Early detection allows for immediate intervention and better management of the condition.

If the screening suggests cystic fibrosis, further tests, such as a sweat test, are conducted to confirm the diagnosis. Early diagnosis through newborn screening can significantly improve outcomes for children with cystic fibrosis.

How does cystic fibrosis affect daily life?

Living with cystic fibrosis requires daily management, including airway clearance techniques, medications, and dietary supplements to maintain lung function and overall health. This can take considerable time and effort, but with a comprehensive care plan, many people with CF can live full, active lives.

Regular check-ups with a CF care team are essential for monitoring health, adjusting treatments, and preventing complications. Although CF can present challenges, advances in treatments and support networks have greatly improved the quality of life for people living with the condition.

What are the complications of cystic fibrosis?

Cystic fibrosis can lead to several complications, especially if not well-managed. The most common complications involve the lungs, where repeated infections can cause damage and lead to chronic conditions like bronchiectasis. Other complications include diabetes, due to damage to the pancreas, liver disease, and osteoporosis.

People with CF also face a higher risk of developing digestive issues, such as intestinal blockages and gallstones. Managing these complications requires a multidisciplinary approach, with treatments tailored to each individual’s specific health needs.

Cystic Fibrosis charity and other information and support groups

UK-Based Charities and Support Groups

  1. Cystic Fibrosis Trust

    • Website: www.cysticfibrosis.org.uk
    • The Cystic Fibrosis Trust is the UK’s leading charity for those affected by CF. They provide a range of support services, fund research, and advocate for people living with cystic fibrosis.

  2. CF Support Group

    • Website: www.cfsg.org.uk
    • CF Support Group offers advice, social support, and a community for people with cystic fibrosis and their families in the UK. They also raise awareness and campaign for better treatments and care.

  3. Live Life Give Life

    • Website: www.livelifegivelife.org.uk
    • This UK charity focuses on raising awareness of organ donation, an important issue for many people with cystic fibrosis, and offers support for transplant recipients.

  4. Just Breathe

    • Website: www.justbreathecharity.org
    • Just Breathe is a UK-based charity that helps cystic fibrosis patients through funding and providing essential support for daily treatments and care.

US-Based Charities and Support Groups

  1. Cystic Fibrosis Foundation (CFF)

    • Website: www.cff.org
    • The Cystic Fibrosis Foundation is a US-based nonprofit organisation that funds research into CF and provides extensive resources, including support networks, advocacy, and educational materials.

  2. Boomer Esiason Foundation

    • Website: www.esiason.org
    • This US foundation, founded by former NFL player Boomer Esiason, raises funds for CF research and supports people affected by the condition with scholarships, grants, and patient services.

  3. Claire’s Place Foundation

    • Website: www.clairesplacefoundation.org
    • This US charity provides emotional and financial support to individuals with CF and their families, offering resources for those dealing with the everyday challenges of the condition.

International Charities and Support Groups

  1. European Cystic Fibrosis Society (ECFS)

    • Website: www.ecfs.eu
    • The ECFS is dedicated to improving research, care, and education related to CF across Europe. They also run events and conferences for medical professionals and those affected by CF.

  2. CF Europe

    • Website: www.cf-europe.eu
    • CF Europe is a federation of national cystic fibrosis organisations in Europe. They focus on research, awareness, and improving the quality of life for people with CF across European countries.

  3. Cystic Fibrosis Canada

  • Website: www.cysticfibrosis.ca
  • Cystic Fibrosis Canada is a charity focused on funding research and improving CF care in Canada. They offer support services and advocacy for those living with CF.

Other Support and Resources

  1. Children’s Organ Transplant Association (COTA)
  • Website: www.cota.org
  • COTA helps families of children with cystic fibrosis raise funds for organ transplants, providing financial support and resources.
  1. Project CF Spouse
  • Website: www.projectcfspouse.org
  • This US-based group offers support for the spouses and partners of people with CF, providing a community where they can share experiences and advice.
  1. Team Boomer
  • Website: www.teamboomer.org
  • A branch of the Boomer Esiason Foundation, Team Boomer encourages people with CF to stay active and promotes sports participation for raising CF awareness.
  1. Genetic Disorders UK
  • Website: www.geneticdisordersuk.org
  • This charity provides information and support for various genetic disorders, including cystic fibrosis, offering access to resources and advocacy for patients and their families.

Online Support Communities

  1. CF Warriors
  • Website: www.cfwarriors.org
  • CF Warriors is a global online community offering support and inspiration for young people with cystic fibrosis, sharing stories and connecting CF patients around the world.
  1. CF Family Connections
  • Website: www.cffamilyconnections.org
  • This online platform provides resources and a community for families affected by cystic fibrosis, offering connections to others dealing with the condition and educational materials.
  1. CF Roundtable
  • Website: www.cfroundtable.com
  • CF Roundtable offers a collection of personal stories, advice, and medical insights from people living with CF. They publish a quarterly magazine and host an online community.
  1. CF Yogi
  • Website: www.cfyogi.org
  • CF Yogi offers free, live online yoga classes tailored for people with cystic fibrosis, helping individuals stay active, manage stress, and improve their respiratory health.
  1. CF Mummy
  • Website: www.cfmummy.com
  • This UK-based blog provides advice and insights from a mother living with CF, offering personal stories and resources for parents with CF or those raising children with the condition.
  1. CysticLife
  • Website: www.cysticlife.org
  • CysticLife is an online community for people with CF, their families, and caregivers. It offers a platform to ask questions, share experiences, and find support.

These organisations provide a range of services, from emotional and financial support to advocacy and research funding, helping to improve the lives of those affected by cystic fibrosis.

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