Organizations and Resources for Cystic Fibrosis Patients and Families
- CFAA
- Sep 14
- 17 min read
Here we have compromised a document to list all the current programs, apps or articles to assist in finding specific programs or resources to aid with the many types of ways that patients and families may need.
Please email cfalternativealliance@proton.me if there's any dead links, expired programs or any updates we can add to this resource.
Current Update: 9/2025
Australia Resources
Cystic Fibrosis Australia (CFA), an Australian national organization aimed at raising awareness and education of cystic fibrosis through advocacy and research
Cystic Fibrosis Community Care (CF Community Care) the largest Australian state-based organization dedicated to raising awareness of CF, providing support services and advocacy to people with CF and funding research into CF. CF Community Care represents over 1,700 people living with CF in New South Wales and Victoria.
Cystic Fibrosis Western Australia (CFWA) a Western Australian based organization that funds critical research and essential support services to improve the lives of children and adults affected by cystic fibrosis.
Europe Resources
Vaincre la Mucoviscidose, a French based organization founded in 1965, providing research, health collaboration, social support and information.
Association Grégory Lemarchal, a French organization dedicated to information outreach and research for cystic fibrosis, named after the French singer and Star Academy winner Grégory Lemarchal
Build4Life, a voluntary Irish Cystic Fibrosis charity that raises funds to develop CF facilities.
Cystic Fibrosis Ireland (CFI), a voluntary Irish organization set up in 1963 by parents, to aid patients with CF by improving facilities and treatments.
Child Health International (CHI) a UK-based organization providing help especially in Eastern Europe, concentrating on low-cost, sustainable solutions based on teamwork and family involvement.
Chloe Cotton Trust Fund, a UK-based foundation to help support families and their children with cystic fibrosis.
Cystic Fibrosis Foundation Slovenia, a Slovenian association providing information and care for CF patients and their families
Nederlandse Cystic Fibrosis Stichting, a Dutch organization providing research, information, and care for people and families with cystic fibrosis
Cystic Fibrosis Trust, a UK charity providing research, information and care for people with cystic fibrosis
DCFH - Deutsche CF-Hilfe - Unterstützung für Menschen mit Mukoviszidose e.V., a German-based patient organization to support people with cystic fibrosis
European Cystic Fibrosis Society (ECFS), a Denmark-based organization of clinicians and scientists actively engaged in CF research, care and collaboration
Mukolife.com is a German social network for the CF community where members can post blogs, ask questions, chat, maintain a profile, contact others and search members. It is created by the CF community for the CF community.
Cisztás Fibrózis Betegek Egyesülete (CFBE), Association of cystic fibrosis patients organization to support people and families with cystic fibrosis.
North America Resources
Attain Health Foundation, an organization that helps individuals living with cystic fibrosis optimize their health through partnership and peer support.
The Breathe Foundation : Those with CF in New Jersey
Claire's Place Foundation, a US-based non-profit providing support to children and families affected by cystic fibrosis. Named in honor of Claire Wineland, who lived with CF her entire life and died at the age of 21. Claire was an activist, author, TEDx speaker, and social media star who received numerous awards.
Blooming Rose Foundation, a US-based organization that offers support and social services to families with a new diagnosis of CF.
Boomer Esiason Foundation, a US-based organization supporting research aimed at finding a cure for cystic fibrosis as well as providing education and raising quality of life for people with cystic fibrosis, is named after Boomer Esiason, a former NFL quarterback whose son Gunnar has cystic fibrosis.
Breathe 4 Tomorrow Foundation (B4TF), a US-based organization focused on making life easier one breath at a time for people with CF through assistive services, awareness, and research,
Breathe Bravely, a US-based organization committed to connecting and serving the CF community through the art of singing, offers free vocal lessons and features a CF-based virtual choir.
Cystic Fibrosis Continuity of Care, LLC, is a US-based specialty nurse consulting firm that provides both clinical and business process improvement services surrounding the coordination of care for patients living with CF.
Cystic-L, a listserv and a website dedicated to the exchange of information and support specific to cystic fibrosis. Operating since 1994, Cystic-L serves people with CF and those who share their lives: medical professionals, scientists, researchers, parents, grandparents, spouses, siblings, friends, and significant others.
Cystic Fibrosis Canada (CCFF), a Canada-wide health charity, funds cystic fibrosis research and care.
Cystic Fibrosis Foundation (CFF), a US non-profit providing the means to cure and control cystic fibrosis
Cystic Fibrosis Lifestyle Foundation (CFLF) seeks to create therapies that engage adolescents and young adults with cystic fibrosis as active agents in their healthcare, physically, psychologically, and spiritually, thereby enabling attitudes and lifestyles that create stronger and longer lives for themselves. Founded by Brian Callanan
Cystic Fibrosis-Reaching Out Foundation a US-based network of information and support for people with CF and their families.
CysticLife.org (CL), A positive social network for the CF community where members can post blogs, ask questions, maintain a profile, contact others, and search members by age, location, gender, and relation to CF.
Elizabeth Nash Foundation, a US-based organization focused on research, education, and patient support, is named after scientist Elizabeth Nash.
Emily's Entourage, a nonprofit organization that raises money and awareness to help find a cure for rare ("nonsense") mutations of cystic fibrosis (CF), named after Emily Kramer-Golinkoff.
Help One Love One, a US-based non-profit organization assisting adults with CF with nutritional support.
Liv for a Cure, a US-based foundation dedicated to raising money for the fight against CF.
Liam Foundation, a non-profit organization dedicated to raising money and enhancing the lives of those with Cystic Fibrosis.
Lungs for Life Foundation, a US-based organization focused on improving the quality of life for people with CF through assistive services, education and research.
Mauli Ola Foundation, based out of Hawaii, co-chaired by pro surfer Kala Alexander, that takes kids (and adults) with CF surfing (often with world champion surfers such as Kelly Slater and Sunny Garcia) introducing them to the natural therapeutic effects of the ocean. The foundation strives to raise awareness of CF.
National Cystic Fibrosis Awareness Committee (NCFAC), a US-based group focused on increased public CF awareness through an annual national Cystic Fibrosis Awareness observance.
New Jersey State Organization of Cystic Fibrosis (NJSOCF), an organization in New Jersey whose mission is to ease the financial burdens placed on the cystic fibrosis community and offer support.
Rock CF Foundation, a US-based non-profit organization that uses the arts, entertainment, fashion and fitness to increase awareness and raise funds for cystic fibrosis. Founded by Emily Schaller.
Take A Breather Foundation, grants wishes for children living with CF in the Philadelphia area. Founded in 2012.
Piper's Angels Foundation (PAF), its mission is to support and improve the lives of people in the CF community by raising awareness through education, offering life-expanding activities, providing urgent financial support and funding essential research.
Point A Fibrosis, a US-Based non-profit organization destined to help provide services to patients diagnosed with Cystic and Pulmonary Fibrosis. Founded by Arjav Mehta, Rohan Jaganath, and Shadab Ali
Shinerama : Canada university students raising money for CF
Colton Underwood Legacy Foundation: programs and equipment to CF patients
StarBright Foundation : financial services for those with children with intellectual and developmental disabilities
CF Voices : Organization that shares awareness on the impact of CF
Foundation Care CF : Pharma and Allopathic Support (meds & equipment)
Kroger Specialty Pharmacy CF : Pharma and Allopathic Support (meds & equipment)
Parenting Children with Health Issues : resources for parents with children and health issues
Jerry Cahill Foundation for CF : Cystic Fibrosis Podcast, CF Wind Sprints, and “You Cannot Fail.”
CF Services Pharmacy : National mail order pharmacy for RX, subsidiary of CFF
Healthwell Foundation : Grants for Cystic Fibrosis Treatments & CF Vitamins and Supplements
Cure4CF: raises funds for medical research
Genetically Handicapped Adult Program : California, USA program
National Organization of African Americans with CF : CF Coloring Book & The Wright CF Screening Tool
Cystic Fibrosis Engagement Network : educational and advocacy organization
The Bonnell Foundation Living with CF : financial assistance, scholarships, and lung transplant grants
CF Roundtable : scholarships, speakers, awards
CF Legal : email contact
CFF Compass: CFF program for assistance with pharma, healthcare and allopathic providers
Newborn Screening Info : screening includes basic CF mutations
MVW Vitamins : pharma supplements formulated for CF (recommend researching the ingredients of this product)
Alliance for Patient Access: resources on protecting your medical rights, advocacy
Cystic Dream Funds : financial assistance to CF patients
CF Source : Vertex (pharma) program
Utah Valley Institute of Cystic Fibrosis : CF nonprofit providing support, education and resources.
Cystic Fibrosis Family Connection : Charitable, not-for-profit corporation established to assist cystic fibrosis patients and their families. Funded as an umbrella for a variety of activities to help CF patients and their families cope with the challenges of this disease.
Cystic Fibrosis Awareness Foundation : dedicated to funding research for treatments and a cure.
Cystic Fibrosis Association of North Dakota : Member association for CF patients and families in North Dakota
CF Americas : nonprofit dedicated to providing medicine, equipment, education, and hope to children and families coping with CF in Central America and the Caribbean.
Friends & Families of Cystic Fibrosis : Michigan based organization for support and assistance
Bucks County Cystic Fibrosis Alliance : caregivers and patients with CF living in Bucks County Pennsylvania whose mission is to foster and promote the medical and social needs of Cystic Fibrosis patients and their caregivers by accumulating and dispersing financial resources through charitable endeavors.
Families and Friends Supporting Cystic FIbrosis Care : “CF Care” was established to ensure that CF patients have access to the special programs they need in order to maintain their health and achieve their goals Additionally, we fund unique educational initiatives and research endeavors.
Cure CF Miami : Miami based foundation supporting the CFF
CF Pharmacies : CF Association of Erie County, PA
Muriel's Breath of Life : help close financial gaps for those with CF in the Tri-State area of Pittsburgh.
PA CF INC: supporting individuals and families in Pennsylvania and grants for travel expenses
Cystic Fibrosis - Reaching Out Foundation, Inc. : cover travel expenses
International Resources
Cystic Fibrosis Worldwide (CFW), an international network concentrated on increasing quality of life and life expectancy for people with cystic fibrosis
CysticFibrosis.com, an internet information hub with support forums
Sharktank.org, an internet group composed mostly of patients and parents. Research and education are the main focus with the objective that knowledge of the disease wallows better decision-making and improves overall health.
Pafibrosis.org (PAF), an organization destined to help provide services to patients diagnosed with Fibrosis, a youth-led organization by the youth and for the youth.
Cystic Fibrosis Alternative Alliance CFAA : Nonprofit and association to support families and patients looking to supplement their care with natural and alternative methods.
CFPhysio: evidence based education of physio health.
SMART Patients Support Group Online
Research Awards for Cystic Fibrosis by P.A. Cystic Fibrosis, Inc
Cystic Fibrosis Research Institute : Non Profit funding innovative research and education, advocacy, and psychosocial support programs and services to those with CF and their families and caregivers.
Middle East Cystic Fibrosis Association MECFA : The Middle East CF Association is a nonprofit organization registered in Massachusetts, USA. The mission of MECFA is to improve health outcomes for CF patients in the Middle East, North Africa, and Central Asia.
Needy Meds: national non-profit that connects people to programs that will help them afford their medications and other healthcare costs. Includes lists of diagnosis based assistance programs, prescription assistance programs, medical transportation services, travel expense services, retreats, camps, and recreational programs and scholarships.
Other CF Related Organizations
Asuragen: Carrier Screening and Testing For Cystic Fibrosis
NORD : Rare Disorder Organization
Icing Smiles: Cakes for patients and families with CF & other diseases
Breathe Strong CF : Miles for Cystic Fibrosis and the Cystic Fibrosis Lifestyle Foundation have become BreatheStrong CF, an organization dedicated to supporting the active lifestyles and overall wellness of individuals with CF.
Miracle Flights : Support groups, resources and medical flights
Abbvie CF Commitment : scholarships, food recipes
Happy Heart Families : special health needs parent coach and tips and tools for CF parents
CF Yogi : Program for CF patients and families
Cystic Fibrosis Journal : The CF Journal is the official journal of the European Cystic Fibrosis Society
CFTR Gene Database : CFTR2 is a website that provides information for patients, researchers, and the general public about specific variants in what is commonly referred to as the cystic fibrosis (CF) gene.
Cystic Fibrosis Community & Resources : Community boards and general CF education and resources.
CF Community Collective — Breathe Bravely : Collective of CF nonprofit organizations that are focused on positive collaboration and encouragement.
Cystic Fibrosis (CF) Community | Everyday CF : Vertex/Pharma sponsored Resource based Guide
Community Voice | Cystic Fibrosis Foundation (community support program by the CFF)
Natural Health Resources:
CF Natural Health : online resource for holistic, accessible, trustworthy information on nutrition, supplementation, herbal support for cystic fibrosis, digestive complaints, respiratory illness and other health challenges.
Cystic Fibrosis Alternative Alliance : Non profit and Membership for CF patients and families to gain assistance, education, resources, discounts and more. Focusing on alternative and natural but overall encouraging and focusing on individual care and access of each cystic fibrosis patient.
Mother Earth News : The original guide to Living Wisely. Most popular and longest running sustainable lifestyle magazine, providing wide ranging, expert editorial coverage of organic foods, country living, green transportation, renewable energy, natural health and green building.
JAMA : Contemporary and Alternative JAMA.
Other Blogs, Articles, Sources, Etc
A Comprehensive and Integrative Approach to Cystic Fibrosis by Rupa Health
Yoga for better Breathing by Beam Feel Good
4 Natural Treatments for CF by Dr. Axe
CF & Essential Oils by Hopewell Oils
Herbal Remedies Play a Role in Maintaining My Good Health by Cystic Fibrosis News Today
CF Treatment: Functional Medicine by Advanced Functional Medicine Article
CF Ayurveda Treatments by Joyful Belly
Integrative and Holistic Approach to CF : John D. Mark, MD, a pulmonologist at Lucile Packard Children’s Hospital Stanford, shares his extensive knowledge of integrative medicine and its complementary use in conjunction with cystic fibrosis medical regimens. Dr. Mark is a Clinical Professor of Pediatrics in Pediatric Pulmonary Medicine at Lucile Packard Children’s Hospital at Stanford.
Cystic Fibrosis News Today : digital platform intended to provide the cystic fibrosis (CF) community with the most recent news and information on CF, as well as first-hand community perspectives from our patient and caregiver columnists.
Cystic Fibrosis : A functional perspective by Kingdom Healthcape
Contemporary and Alternative Medicine Cystic Fibrosis by Atlantic Health (pharma based integrative care)
Alternative approach to cystic fibrosis by the Irish Times
Cystic Fibrosis Alters the Immune System From Childhood article
Cystic Fibrosis treatment with Chinese Medicine by Effi Kfir
Promoting and Navigating CF in a Natural World by Alternative Medicine Blog
Early Years of Cystic Fibrosis by Cystic Fibrosis Medicine and Cystic Fibrosis Online
CF Parent Resources (Thanks to HappyHeartFamilies)
Cystic Fibrosis Books
Complementary Symptom Management for Cystic Fibrosis by Tracie Lawlor Trust for Cystic Fibrosis
Dr. Wallach Books: Let’s Play Doctor discusses CF
Other Book Recommendations:
Apps to Help with CF
Cronometer: personalized nutrition app to track macro and micro nutrients and count calories.
Breathe Easy: Spirometry tracking device and on the go
Spirobank : Spirometry-oximetry test app for remote patient monitoring and home use.
CF Hero: tracking CF specific health
Cystic Fibrosis Manager: tracking CF specific health
CF Med Care: tracking CF specific health
MyCyFaPP: tracking CF specific health
CF Physio: lung/physiotherapy app
Pharmaceutical Medicine Programs/Education:
Grants for Patients with CF:
CFA Erie Scholarship Program: Scholarship Policy - With advancements in research, medicines, and treatments, people are living longer with CF and have a better quality life. The CFA celebrates these achievements with grant scholarships, to qualified recipients, who are eligible under the CFA DDD Policy.
Abington Crest Nursing Scholarship: Offers a "no essay" scholarship for $2000.
AbbVie CF Scholarship: Forty awards of $2500 will be provided to CF individuals attending an accrediting university. Scholarships will be selected based on their academic record and extracurricular activities, essay and creative presentation.
Bonnell Foundation Marge Carmona Education Scholarships: This scholarship provides up to $2500 in funds for high achieving CF individuals attending undergraduate institutions.
Boomer Esiason Foundation General Academic Scholarships: Scholarships between $500-$2500 are awarded to assist CF individuals pursuing undergraduate and graduate degrees. Grants are awarded quarterly on the basis of demonstrated need and academic accomplishment. Travel expense assistance.
CF Lifestyle Foundation: Provides up to $500 recreation grants to CF individuals to defray costs of exercise activities.
CF Scholarship Foundation: Scholarships up to $1000 for students with CF enrolling in an undergraduate college program or a vocational school in the fall.
The Elizabeth Nash Foundation Scholarship Program: Scholarships are awarded to CF individuals on the basis of demonstrated need and accomplishment, both academic and other.
Accessia Health - Patient Assistance Programs : financial assistance with copays, health insurance premiums, travel costs, and other medical expenses for rare or chronic health conditions.
Adult Cystic Fibrosis Treatment Program Missouri : Adult CF program for Missouri
Assistance Fund, Inc. - Cystic Fibrosis Copay Assistance Program : Copay Assistance Program for pharmaceutical medications
Breathe Believe: Program that raises funds to provide financial assistance to individuals with cystic fibrosis who cannot afford the essentials to stay alive. We will give hope to those struggling with CF who find themselves unable to pay insurmountable bills for necessary medications and hospitalizations.
Breathe for Bea Foundation : Scholarship and financial assistance programs, also Hospital Help program.
Breathin is Believin - Cody Dieruf Benefit Foundation (CDBF) - Medical Assistance Program : Medical assistance program covering common costs like travel expenses to clinics, insurance copay, pharmaceutical expenses, out of pocket expenses. Also offers scholarships.
Children with Special Health Care Needs (CSHCN) Services Program : government programs that include newborn screening.
Claire's Place Foundation, Inc. - Extended Hospital Stay Grant: grant that provides assistance with rent, utilities and monthly bills while a patient is in the hospital.
Cystic Dreams Fund : financial assistance to patients with copays, medical bills, and transplant related expenses.
Cystic Fibrosis Association of North Dakota : scholarships for members, assistance with medication and travel reimbursements, hardship assistance and organ transplant expenses.
Genentech Endowment for Cystic Fibrosis - Pulmozyme Access Solutions : Pulmozyme Copay manufacturer program
Jelly Bean Foundation, Inc. (JBF) - CF/Lung Transplant Patients Grant
Just Breathe Foundation : Financial assistance to CF patients in Western NY
Kentucky Office for Children with Special Health Care Needs (OCSHCN) : Kentucky government program
Live2Thrive : pancreatic enzyme support program
Living Breath Foundation : Provides college scholarships, financial assistance with medications and medical equipment. May provide financial assistance for those out of work.
Nebraska Department of Health and Human Services - Disabled Children's Program : Nebraska government program
New Mexico Children and Youth with Special Health Care Needs (CYSHCN) : New Mexico government program
Ohio Department of Health - Children with Medical Handicaps - Adult Cystic Fibrosis Program Ohio Department of Health - Children with Medical Handicaps : Ohio Adult CF government program
(CMH) Patient Advocate Foundation (PAF) - Cystic Fibrosis Fund & PAF CF Health Equity Fund : copay assistance and health equity funds.
NJ Pharmaceutical Services for Adults with Cystic Fibrosis : New Jersey Adult state services assistance with medications and copays, office visits, diagnostic testing, medical equipment and supplies, nutritional supplements, and food money support.
Special Health Care Needs Program : government funded programs
Take A Breather Foundation : make a wish type of program (Patient wont qualify if you've had a wish granted through other organizations.
The Joey Fund : Grant Program for Massachusetts residents or those at MA care centers.
Wisconsin DHS - Wisconsin Chronic Disease Program (WCDP) - Adult Cystic Fibrosis Wyoming Department of Health - Children's Special Healthcare Program (CSH) : Wisconsin government program
Additional resources for Camps
Camp Pelican Pulmonary Disease Camp - Session 1 : week long overnight camp for children with pulmonary disorders, such as asthma, cystic fibrosis, tracheotomy and ventilator assisted children.
CDBF Mothers' Retreat : Free Retreat in Montana for Mothers of CF children
Mauli Ola Foundation Camp for Cystic Fibrosis : surf camp and programs all over US
Additional resources for Scholarships
AbbVie CF Scholarship : $25000 for higher education scholarship
Anita Giampalmi Endowed Scholarship : Awarded to a student with Cystic Fibrosis who has educational and professional goals, and who demonstrates a positive outlook and tenacity in the spirit of meeting their everyday and long-term challenges. $4000-6000.
BEF General Academic Scholarships : higher education scholarship
Breathe for Bea Scholarship Program : As of 2025, doesnt appear to be active, will reach out to Foundation.
Elizabeth Nash Foundation Scholarship : scholarship to assist CF patients persuing undergrad and graduate degrees. US Citizens only.
Gunnar Esiason Own It Scholarship : As of 2025, it was temporarily suspended. Will update when changes are made.
Helen M. Eisenman Scholarship for the Arts : This scholarship will award two deserving students $5,000 each towards their tuition in their respective field of the arts: fine arts, computer graphics, design, music, choral, photography, filmmaking, creative writing, and poetry, to name a few. It is open to anyone seeking a degree, from an associate to a doctoral degree in the creative arts.
Jamie Bax Memorial Scholarship : higher education scholarship
Jennifer Leigh Soper Cystic Fibrosis Scholarship : The Jennifer Leigh Soper Cystic Fibrosis Scholarship is awarded to high school seniors who have been diagnosed with cystic fibrosis. Students seeking an associate's or bachelor's degree are welcome to apply.
Jerry Cahill You Cannot Fail Scholarship : Jerry Cahill You Cannot Fail Distinction Scholarship provides financial assistance for college to undergraduate students who have been involved in athletics and who have cystic fibrosis (CF).
Lauren Melissa Kelly Higher Education Scholarship : The academic scholarships of up to $2500 are awarded to two adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor and graduate degrees.
Lawrence Madeiros Memorial Scholarship : Higher education Assistance to students with chronic disorders
Lea Faraone Memorial Fly Me to the Moon Grant : Home health, medical equipment, therapy grant program
Living Breath Foundation Scholarship : We offer financial aid grants to assist with the extra costs associated with living with Cystic Fibrosis. Scholarships to people which who wish to continue their education beyond high school, hospital care packages to the Stanford Adult CF clinic for patients who are admitted unexpectedly through the clinic, gas cards to the Social Worker at the Stanford Adult CF clinic to help patients who are traveling great distances to make their appointments, and double lung transplant aid to qualifying individuals.
McBurney Center Scholarships for Students with Disabilities : scholarship for students with disabilities
PACFI - Missy and Angela Woolsey Education Award : CF and Pennsylavia patients only, higher education
Paul Drury Memorial CF Sibling Scholarship : undergrad and grad scholarships for family members of CF patients
REC & FIT Scholarship : The scholarship can be used to cover expenses such as recreation activities (team sports, fitness classes, etc) as well as personal exercise equipment and memberships (ski pass, golf).
Rosemary Quigley Memorial Scholarship : The Rosemary Quigley Memorial Scholarship is offered to a student who refuses to allow cystic fibrosis to hold them back and who plans to attend a college or university within the U.S. Students who demonstrate academic ability, good character, and leadership skills are encouraged to apply.
Sacks for CF Scholarship : The Sacks for CF Scholarship is related to quarterback sacks made during the NFL season. The undergraduate and graduate award is made annually to recipients who strive for therapy adherence and academic success. “Sacks for CF” means money in the bank for college students who have cystic fibrosis. For every sack recorded during NFL Monday Night Football games, the Sacks for CF Scholarship Program receives a donation from a Boomer Esiason Foundation corporate partner.
The Susanna and Lucy DeLaurentis Charitable Foundation Memorial Scholarship : The scholarship is a $1,000 award, paid directly to the honoree’s institution of higher learning. For college bound high school seniors.
Vertex All in for CF Scholarship : The Vertex Foundation Scholarship helps people with cystic fibrosis (CF) and their families — including siblings, caregivers, spouses and children — pursue two-, three-, four-year or graduate degrees by offsetting some college or graduate school attendance costs. Recipients receive a one-time award of $5,000 USD/CAD toward the 2025-2026 academic year. Canada and US Schools.
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