Empower yourself with a wealth of cystic fibrosis resources, from emotional support to financial aid and cutting-edge treatments, all in one place.
Cystic Fibrosis (CF) is a complex genetic disorder that affects multiple organ systems, primarily the lungs and digestive system. Living with CF or caring for someone with the condition can be challenging, both emotionally and financially. Understanding and accessing support options, services, and resources is crucial for patients, family members, and caregivers to navigate the complexities of CF management effectively. These resources can provide essential information, financial assistance, emotional support, and practical help in daily care routines. By learning about and utilizing available support systems, individuals affected by CF can improve their quality of life, enhance treatment adherence, and better cope with the challenges posed by this chronic condition.
Cystic Fibrosis Fact Sheets: Key Information About the Disease
What Is Cystic Fibrosis? Fact Sheet: A comprehensive overview of cystic fibrosis, including its signs, symptoms, and management strategies, provided by the National Heart, Lung, and Blood Institute.
Cystic Fibrosis Fact Sheet: A detailed PDF document outlining the basics of cystic fibrosis, including its prevalence, symptoms, diagnosis, and genetic factors.
Cystic Fibrosis: A MedlinePlus resource offering a summary of cystic fibrosis, along with links to various aspects of the disease, including diagnosis, treatment, and living with the condition.
Cystic Fibrosis Genetics Fact Sheet: A downloadable PDF from MedlinePlus Genetics providing in-depth information on the genetic aspects of cystic fibrosis, including inheritance patterns and gene mutations.
Advocating for Cystic Fibrosis: A List of Patient Advocacy Groups
Cystic Fibrosis Foundation: Provides comprehensive support for individuals with CF, including funding research, developing new treatments, and offering educational resources and care center accreditation.
Cystic Fibrosis Research Institute (CFRI): Focuses on funding research, providing educational programs, and offering support services to improve the quality of life for those affected by CF.
Cystic Fibrosis Engagement Network: Serves as a leading educational and advocacy organization focused on policy matters impacting cystic fibrosis patient access to optimal care.
Boomer Esiason Foundation: Provides financial support, educational resources, and awareness campaigns to improve the lives of people with CF and their families.
Claire’s Place Foundation: Offers emotional and financial support to children and families affected by CF, providing hope and assistance in managing the challenges of living with the condition.
United States Adult Cystic Fibrosis Association (USACFA): Publishes CF Roundtable, a quarterly newsletter, and advocates for adults with CF, providing a platform for sharing experiences and information.
Emily’s Entourage: Accelerates research for new treatments and a cure for nonsense mutations of CF, while also raising awareness and providing support for the CF community.
Finding Support: A Directory of Cystic Fibrosis Support Groups
CF Foundation Compass: Offers personalized support to help people with CF and their families navigate insurance, financial resources, and legal information, ensuring no one faces CF-related challenges alone.
CFRI Support Groups: Provides various online peer-to-peer support groups for different segments of the CF community, including adults with CF, caregivers, teens, and those who have lost someone to CF.
CF Peer Connect: Matches individuals with CF or their family members with trained peer mentors who have similar experiences, offering one-on-one support and guidance.
CFReSHC: The Cystic Fibrosis Reproductive and Sexual Health Collaborative offers support and resources specifically focused on reproductive and sexual health issues for women with CF.
CF Warriors: Provides a supportive online community for people with CF and their loved ones, offering forums, resources, and virtual events to connect and share experiences.
Attain Health Foundation: Offers personalized health coaching, educational programs, and support services to help individuals with CF improve their overall health and quality of life.
Jerry Cahill’s Cystic Fibrosis Podcast: Provides a platform for sharing stories, experiences, and advice from the CF community, offering support and inspiration through regular podcast episodes.
Connecting with Others: Online Forums and Discussion Boards for Cystic Fibrosis Patients
CysticFibrosis.com Forum: A large, active forum where CF patients, caregivers, and healthcare professionals can connect, share experiences, and discuss various aspects of living with CF.
Cystic Fibrosis News Today Forums: A platform for CF patients and their families to discuss research, treatments, daily life challenges, and connect with others in the CF community.
Smart Patients Cystic Fibrosis Community: An online support group where CF patients and their families can share experiences, discuss the latest medical research, and offer peer support.
Reddit r/CysticFibrosis: A subreddit dedicated to discussions about CF, where members can share stories, ask questions, and offer support to others affected by the condition.
CF Foundation Community Voice: An online platform hosted by the Cystic Fibrosis Foundation, allowing CF community members to connect, share experiences, and participate in research and advocacy efforts.
Cystic-L: An email-based discussion group for adults with CF, their families, and healthcare professionals, focusing on various aspects of living with and managing CF.
Participating in Research: Current Cystic Fibrosis Clinical Trials
ClinicalTrials.gov – Cystic Fibrosis Studies: A comprehensive database of privately and publicly funded clinical studies conducted around the world, offering up-to-date information on current CF trials in the United States.
Cystic Fibrosis Foundation Clinical Trials Finder: An interactive tool that allows patients to search for CF clinical trials based on age, mutations, and other criteria, helping connect individuals with suitable research opportunities.
UCSF Cystic Fibrosis Center Clinical Trials: Provides information on ongoing CF clinical trials at the University of California, San Francisco, including studies on new therapies and treatment approaches.
Johns Hopkins Cystic Fibrosis Center Research: Offers details on current CF research projects and clinical trials conducted at Johns Hopkins, focusing on various aspects of CF treatment and management.
Emory Cystic Fibrosis Center Clinical Trials: Lists active clinical trials for CF patients at Emory University, covering a range of therapeutic areas and age groups.
University of Florida Cystic Fibrosis Research Center: Provides information on ongoing CF clinical trials at the University of Florida, including eligibility criteria and study descriptions.
Stanford Medicine Cystic Fibrosis Center Research: Offers details on current CF research projects and clinical trials at Stanford, focusing on innovative approaches to CF treatment and care.
Managing Costs: Financial Assistance for Cystic Fibrosis Patients
Cystic Fibrosis Foundation Compass: Offers personalized support to help people with CF navigate insurance, financial resources, and legal information, ensuring access to care and treatments.
Boomer Esiason Foundation: Provides various financial assistance programs for CF patients, including transplant grants, disaster relief, and educational scholarships.
Claire’s Place Foundation: Offers grants to families of CF patients experiencing extended hospital stays to help cover basic living expenses.
HealthWell Foundation: Provides financial assistance for CF-related prescription medications and supplements to eligible patients.
Cystic Fibrosis Lifestyle Foundation: Offers grants to support physical activities and recreation for CF patients, promoting overall health and well-being.
The Bonnell Foundation: Provides financial assistance for medical equipment, counseling services, and CF medications not covered by insurance.
Cystic Dreams Fund: Offers general financial assistance grants to help CF patients and their families with various expenses related to living with CF.
Piper’s Angels Foundation: Provides urgent financial assistance to CF patients for medically necessary and time-sensitive needs.
Cystic Fibrosis Research Institute (CFRI): Offers various financial assistance programs, including educational scholarships and transplant assistance grants for CF patients.
Traditional Treatments: Conventional Medicine for Cystic Fibrosis
Cystic Fibrosis Foundation Compass: Provides personalized support to help people with CF navigate insurance, financial resources, and legal information related to conventional CF treatments and medications.
Vertex Pharmaceuticals CF Medicines: Develops and produces CFTR modulators, a class of drugs that treat the underlying cause of CF in people with specific genetic mutations.
Pulmozyme by Genentech: Offers information on dornase alfa, an inhaled medication that helps thin mucus in the lungs of people with CF.
Bronchitol by Chiesi USA: Provides details on an inhaled dry powder medication used to improve lung function in adults with CF.
TOBI Podhaler by Novartis: Offers information on an inhaled antibiotic used to treat lung infections in people with CF.
Cayston by Gilead Sciences: Provides details on an inhaled antibiotic used to improve respiratory symptoms in people with CF who have Pseudomonas aeruginosa.
AllianceRx Walgreens Prime: Offers specialized pharmacy services for CF patients, including access to medications and personalized support.
Kroger Specialty Pharmacy: Provides access to CF medications and offers support services for patients managing their treatment regimens.
Accredo Specialty Pharmacy: Offers specialized pharmacy services for CF patients, including medication management and clinical support.
Exploring Alternatives: Complementary and Alternative Medicine for Cystic Fibrosis
Huddy Health: Offers information on holistic approaches for cystic fibrosis, including yoga, supplements, and natural compounds to complement conventional treatments.
KnoWEwell: Provides resources on complementary and alternative medicine treatments for cystic fibrosis, including holistic practices like yoga, massage, acupuncture, and aromatherapy.
Rupa Health: Discusses a holistic, functional medicine approach to cystic fibrosis treatment, incorporating testing, lifestyle modifications, nutrition, and alternative therapies.
Cystic Fibrosis News Today: Hosts forums where CF patients can discuss and share experiences with various complementary and alternative treatments.
CF Foundation Community Voice: Provides a platform for CF community members to discuss and share experiences with alternative and complementary therapies.
Cystic-L: An email-based discussion group where adults with CF, their families, and healthcare professionals can exchange information about alternative treatments and therapies.
Supporting Loved Ones: Resources for Cystic Fibrosis Families and Caregivers
CF Roundtable: A quarterly newsletter published by the United States Adult Cystic Fibrosis Association, providing information and support for adults with CF and their caregivers.
CF Peer Connect: A program that matches people with CF and their family members with trained peer mentors who have similar experiences for one-on-one support.
Happy Heart Families: Offers resources, articles, and tools for parents of children with CF, focusing on communication, discipline, and motivation strategies.
CF Warriors: Provides a supportive online community for people with CF and their loved ones, offering forums and virtual events to connect and share experiences.
Cystic Fibrosis Lifestyle Foundation: Empowers and supports families affected by CF through recreation grants and educational resources promoting healthy, active lifestyles.
Attain Health Foundation: Offers personalized health coaching, educational programs, and support services to help individuals with CF and their families improve overall health and quality of life.
CF Mamas: A support network for mothers of children with CF, providing resources, community connections, and emotional support.
CF Dads: Offers support and resources specifically for fathers of children with CF, including a blog and community forum.
Sibling Support Project: Provides resources and support for siblings of individuals with CF and other chronic health conditions.
The Bonnell Foundation: Offers support services, including counseling and educational resources, for families affected by CF.
Navigating Cystic Fibrosis in School: Resources for Students
Students with CF: A comprehensive resource from the Cystic Fibrosis Foundation providing information and tools to help students with CF navigate school life, including guides for teachers and school staff.
CF Student Connect: An online platform that connects college students with CF, offering peer support, resources, and information on managing CF while pursuing higher education.
CFRI Scholarship Program: Offers educational scholarships to students with CF pursuing undergraduate or graduate degrees, helping to alleviate the financial burden of higher education.
Cystic Fibrosis Lifestyle Foundation: Provides recreation grants to students with CF to support their participation in physical activities and sports, promoting overall health and well-being.
Sacks for CF Scholarship Program: Offers scholarships to college students with CF based on their academic achievements and adherence to daily CF therapy.
CFCareForward Scholarship Program: Provides financial assistance to students with CF who are pursuing higher education, recognizing their academic achievements and community involvement.
USACFA Lauren Melissa Kelly Scholarship: Awards scholarships to students with CF who demonstrate academic excellence and a commitment to furthering their education despite the challenges of living with CF.
Raising a Child with Cystic Fibrosis: Guidance and Support
Paint Her in Color: Offers resources for parents of children with CF, including coping tips, stress management strategies, and information on family dynamics and communication.
Happy Heart Families: Provides articles, audio, and video clips with practical tools, tips, and strategies for parents handling the unique issues faced by families affected by CF.
CF Parent Advisory Board at Children’s Hospital of Philadelphia: A group of parents who work with CF Center staff to enhance medical care and quality of life for children with CF and their families.
Seattle Children’s Cystic Fibrosis Program: Offers comprehensive resources for parents, including developmental guides, care checklists, and educational materials specific to raising a child with CF.
Johns Hopkins Cystic Fibrosis Center: Provides guidance for parents on navigating school-related issues for children with CF, including communication with educators and addressing common concerns.
Cystic Fibrosis Parent Education: Offers CF Education Workshops to parents and caregivers, covering various topics related to current CF research and care.
Claire’s Place Foundation Support Families Network: Connects newly diagnosed families with experienced CF families who provide guidance in navigating the overall care process.
Caregiving for Elderly Cystic Fibrosis Patients: Tips and Strategies
CF Roundtable: A quarterly newsletter published by the United States Adult Cystic Fibrosis Association, providing information and support for adults with CF, including elderly patients and their caregivers.
Emily’s Entourage: Offers resources and support for adults with CF, including older patients, focusing on accelerating research for nonsense mutations and providing community support.
Cystic Fibrosis Research Institute (CFRI): Provides various support programs and resources for adults with CF, including older patients and their caregivers, such as educational materials and support groups.
CF Peer Connect: Matches individuals with CF, including elderly patients, or their family members with trained peer mentors who have similar experiences, offering support and guidance.
Attain Health Foundation: Offers personalized health coaching and support services to help individuals with CF, including older adults, improve their overall health and quality of life.
Jerry Cahill’s Cystic Fibrosis Podcast: Provides a platform for sharing stories, experiences, and advice from the CF community, including perspectives from and about elderly CF patients.
Frequently Asked Questions about Cystic Fibrosis
What is cystic fibrosis?
Cystic fibrosis (CF) is a progressive, genetic disease that affects the lungs, pancreas, and other organs. It causes thick, sticky mucus to build up in various parts of the body, leading to persistent lung infections, digestive issues, and other complications.
How common is cystic fibrosis?
There are close to 40,000 children and adults living with cystic fibrosis in the United States, and an estimated 105,000 people have been diagnosed with CF across 94 countries. It can affect people of every racial and ethnic group, though it is most common in Caucasians.
What causes cystic fibrosis?
Cystic fibrosis is caused by mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene. When a person inherits two copies of the defective gene (one from each parent), it results in the CFTR protein becoming dysfunctional, leading to the symptoms of CF.
How is cystic fibrosis diagnosed?
CF is typically diagnosed through newborn screening, which is conducted in many states. If CF is suspected, a sweat test is performed to measure the concentration of chloride in the sweat. A genetic test can also be done to check for the faulty CFTR gene.
What are the main symptoms of cystic fibrosis?
Common symptoms include persistent coughing, wheezing, repeated lung infections, difficulty gaining weight, greasy stools, and in some cases, male infertility. Symptoms can vary in severity and may affect the respiratory, digestive, and reproductive systems.
How is cystic fibrosis treated?
Treatment for CF is complex and multifaceted. It may include medications to thin mucus, antibiotics to fight infections, pancreatic enzymes to aid digestion, and airway clearance techniques. Lifestyle factors such as nutrition, exercise, and stress management also play important roles in managing CF.
Can cystic fibrosis be cured?
Currently, there is no cure for cystic fibrosis. However, advances in treatment have significantly improved the quality of life and life expectancy for people with CF.
What is the life expectancy for someone with cystic fibrosis?
Life expectancy for people with CF has been steadily improving. As of 2008, the median predicted age of survival was 37.4 years. However, babies born with CF today can expect to live longer due to advancements in treatment.
How does cystic fibrosis affect daily life?
Living with CF requires dedication to treatment routines, which can be time-consuming. On average, adults with CF spend about 108 minutes per day on treatments, regardless of disease severity. CF can affect various aspects of life, including education, work, relationships, and family planning.
Is cystic fibrosis hereditary?
Yes, CF is a genetic disease. It is inherited in an autosomal recessive pattern, meaning that a person must inherit two copies of the defective gene (one from each parent) to develop CF. People with only one copy of the defective gene are called carriers and do not develop CF.
Hope for the Future: Current Research and Potential Cures for Cystic Fibrosis
Cystic Fibrosis Foundation Research: Provides comprehensive information on ongoing research initiatives, clinical trials, and potential breakthrough treatments for cystic fibrosis.
Johns Hopkins Cystic Fibrosis Center Research: Offers details on current CF research projects and clinical trials conducted at Johns Hopkins, focusing on various aspects of CF treatment and management.
Stanford Medicine Cystic Fibrosis Center Research: Presents information on ongoing CF research projects and clinical trials at Stanford, highlighting innovative approaches to CF treatment and care.
University of Iowa Cystic Fibrosis Research Center: Provides updates on their cutting-edge research in CF, including studies on gene therapy and new treatment modalities.
Emory Cystic Fibrosis Center Research: Offers information on their ongoing CF research projects, including studies on new therapies and treatment approaches.
UCSF Cystic Fibrosis Research: Highlights their current research efforts in CF, including studies on personalized medicine and novel therapeutic approaches.
National Heart, Lung, and Blood Institute CF Research: Provides an overview of NHLBI-supported research initiatives aimed at improving CF treatment and working towards a cure.
Emily’s Entourage Research: Focuses on accelerating research for nonsense mutations of CF, providing information on their funded research projects and potential breakthroughs.
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