Cystic Fibrosis Center | Patient Resources

It is recommended that people with cystic fibrosis (CF) follow certain infection control precautions. CF affects everyone differently, and people with CF are prescribed different types of therapies by their care team. Learn about CF treatments and recommended infection control measures to support the health of people with CF. The fact sheets below were developed by the Cystic Fibrosis Foundation.

• Cystic Fibrosis-Related Diabetes Manual (7th edition: 2023)
• Genetic carrier testing for CF
• Hypertonic saline therapy for CF: Is it right for you?
• Newborn screening for CF
• Oral Glucose Tolerance Test (OGTT)
• PICC Information
• Stopping the spread of germs
• Sweat testing procedure and commonly asked questions
• What you should know about germs
• Which Nebulizer for which Drug?

People with cystic fibrosis (CF) often have unique nutritional needs that may change throughout their lifespan. Data shows that for people with CF, pulmonary function and nutrition status are related. Learn about nutritional considerations for people with CF. The fact sheets below were developed by the Cystic Fibrosis Foundation

• Bone Health and CF
• CF Nutrition: Changes through life
• Early nutrition and growth for your young child with CF
• Eating healthy as a teenager with CF
• The Extra Scoop on Vitamins
• Maintaining a healthy weight with CF
• Nutrition for children with CF (four to seven years)
• Nutrition for infants with CF (birth to one year)
• Nutrition for toddlers with CF (one to three years)
• Pancreatic enzyme replacement
• School, enzymes and sports

Learn how you can connect with others in the cystic fibrosis community who have been through a similar situation. Supports are available for patients and family members.

• Attain Health’s Peer Engagement Groups: http://attainhealth.org/peer-engagement-groups
• Cystic Fibrosis Research Institute (CFRI) Support Groups (for adults, teens, and caregivers): https://www.cfri.org/education-support/psychosocial-support-programs/
• CF Master Class: Twelve parents talk about what life is like raising one or more children with cystic fibrosis (CF). A bonus segment features a spouse of a 56-year-old living with CF.
• CF Peer Connect (patients 16+ and family): https://www.cff.org/get-involved/cf-peer-connect
• CF Senior Saturday Meet & Greet | 40+ Aging with CF: Virtual meetings held on the 2nd Saturday of every month.
• Parenthood with CF Support Group: a peer support group for persons diagnosed with CF wherever they are on their parenthood journey. New parents and caregivers, experienced grandparents, and persons exploring fertility options are all welcome!
• Peer To Peer | Piper's Angels
• Project CF Spouse: https://www.projectcfspouse.com/

Learn about organizations and programs that provide education and assistance for people with cystic fibrosis to promote overall wellness.

• Beam’s Virtual Exercise Program: https://www.beamfeelgood.com/cystic%20fibrosis
• Breathe Bravely’s Voice Lessons and Virtual Choir: https://www.breathebravely.org/
• Coach-Ed’s Athletic Scholarships and Mentoring: http://www.coach-ed.org
• Coaching for Adults with CF (taking modulators) | Turning Points
• Community Footprints | Ballaro Dance
• Cystic Fibrosis Research Institute (CFRI) Education and Support: https://www.cfri.org/education-support/
• CF Yogi’s Virtual Yoga for Cystic Fibrosis: www.cfyogi.org
• Inspire Breathworks | Piper's Angels
• Miles for Cystic Fibrosis | Exercise Grants
• Piper’s Angels - Forever Stoke Scholarship: https://www.pipersangels.org/forever-stoke
• Rock CF Foundation: https://letsrockcf.org/
• Salty Life Activity Grants | Vivian Lee Foundation
• Spit It Out | Storytelling and Public Speaking Training: Each training is geared toward people with cystic fibrosis or their caregivers
• The DistrACTORS: The DistrActors is a group of professional actors who utilize storytelling, songs, puppetry and improvisation to create personalized skits for children in hospital, or receiving at-home treatment.
• The Nourished Breath’s Community Journaling: https://www.thenourishedbreath.com/
• Unmasking Mindfulness | Piper's Angels

• Clinical Trials Finder | CF Foundation Clinical Trials Tool
• Informed Consent: Your Rights Are Protected | Cystic Fibrosis Foundation
• Questions to Ask When Considering a Specific Trial | Cystic Fibrosis Foundation
• Why Participate in a Clinical Trial? | Cystic Fibrosis Foundation

Learn about opportunities to connect with others with similar experiences and to advocate for equitable, accessible, and supportive care for the entire cystic fibrosis community.

• 5 Ways to Partner with your CF Care Team: For Families Managing Cystic Fibrosis
• 5 Ways to Partner with your CF Care Team: For Individuals Living with CF
• Attain Health Peer Engagement Group: “Inhale Melanin, Exhale Power” created and geared toward individuals in the Black Community living with CF: http://attainhealth.org/peer-engagement-groups
• CFRI’s Diversity and Inclusion Advisory Committee has created a series of fact sheets and videos to expand awareness of CF diversity, both in the general public, and among underrepresented communities. Diversity and Inclusion | Cystic Fibrosis Research Institute (cfri.org)
• Cystic Fibrosis Foundation’s Community Voice: https://www.cff.org/get-involved/community-voice
• Emily’s Entourage accelerates research and drug development for the final 10 percent of people with CF, including those with nonsense mutations: www.emilysentourage.org
• An Extended Familia for Latinos Living with CF: https://thebonnellfoundation.org/familia/en-home/
• Health Equity in Cystic Fibrosis video | CF Foundation
• The National Organization of African Americans with Cystic Fibrosis (NOAACF): https://noaacf.org/
• United States Adult Cystic Fibrosis Association (information and education by and for adults with CF): https://www.cfroundtable.com/

The Cystic Fibrosis Foundation (CFF) offers several valuable resources and programs to patients and their families. These include access to case managers to answer your questions about things like insurance coverage and financial assistance and a variety of opportunities for peer and community support.

• Cystic Fibrosis Foundation (cff.org)
• CF Foundation Compass: https://www.cff.org/support/get-help-cf-foundation-compass
• CF Peer Connect: https://www.cff.org/get-involved/cf-peer-connect
• Community Conferences: https://www.cff.org/get-involved/community-conferences
• Community Voice: https://www.cff.org/get-involved/community-voice
• CF Legal Hotline Team

• ¿Qué es CF Foundation Compass?
• ¿Qué es Community Voice?
• CF Peer Connect - un programa de apoyo entre pares para personas con FQ y sus familiares mayores de 16 años

Información, recursos y apoyo para personas de la comunidad de fibrosis quística y sus familias. (Information, resources and support for people of the cystic fibrosis community and their families.)

• Cystic Fibrosis Foundation en Español: https://www.cff.org/es/bienvenido
• Cystic Fibrosis Research Institute (CFRI) Recursos en Español: http://www.cfri.org/about-cf/cfri-resources-spanish/
• Cómo administrar los medicamentos inhalados | Cystic Fibrosis Foundation (cff.org)
• Cómo comer sano y ser un adolescente con fibrosis quística | Cystic Fibrosis Foundation (cff.org)
• Comunidad virtual en español para adultos con fibrosis quística (FQ) y padres / personas que cuidan de otros con FQ: https://www.cfri.org/comunidad-virtual-registro/
• DXA (Absorciometría de rayos X de energía dual)
• El reemplazo de las enzimas pancreáticas | Cystic Fibrosis Foundation (cff.org)
• Fibrosis Quística en la Clase: https://www.cfri.org/wp-content/uploads/2022/11/CFRI.2022.ClassroomBooklet.Spanish.pdf
• Fibrosis quística: orden de tratamiento sugerida para el cuidado diario
• Guía para padres sobre los seguros de salud
• Guía de seguros de salud para adultos jóvenes
• La diabetes relacionada a la fibrosis quística | Cystic Fibrosis Foundation (cff.org)
• Limpieza del equipo respiratorio | Cystic Fibrosis Foundation (cff.org)
• Lo que debe saber sobre los microbios | Cystic Fibrosis Foundation
• Somos la Gran Familia FQ: https://thebonnellfoundation.org/familia/es-home/
• Manejando los Problemas Pulmonares y Otros Problemas Respiratorios: Para los Padres de Niños con Fibrosis Quística
• Nutrición y crecimiento tempranos en los niños pequeños con fibrosos quística
• Seguridad del Paciente en Investigaciones Clínicas de FQ
• Su equipo de atención de la FQ | Cystic Fibrosis Foundation (cff.org)
• Técnicas para limpiar las vías respiratorias | Cystic Fibrosis Foundation
• ¿Y qué pasa con los hermanos?: Ayudando a mi familia a lidiar con la situación

Genetic therapies — including mRNA therapy, gene therapy, and gene editing — could potentially benefit everyone with CF, regardless of mutation, and one day provide a cure for the disease. Keep reading to learn how these exciting new therapies would work. The handouts below were developed by the Cystic Fibrosis Foundation.

• Understanding Genetic Therapies: Understanding Genetic Therapies (cff.org)
• Genetic Therapies for CF - Glossary of Terms: Genetic Therapies for CF - Glossary of Key Terms (cff.org)
• Genetic Therapies for CF - Questions to Ask Before Enrolling in a Clinical Trial: Questions to Ask Before Enrolling in a Genetic Therapy Trial (cff.org)

Information and resources for people with cystic fibrosis and their families related to health insurance. Some of the fact sheets below were developed by the Cystic Fibrosis Foundation.

• CF Foundation’s Understanding Insurance
• Common Issues with CF Drug Coverage | CF Foundation
• Insurance Plan Comparison Checklist
• Know Before You Choose
• Medicare Basics for People with CF | CF Foundation
• Medicare Part D 2024 Changes for People With CF | CF Foundation
• One Care Plans in Mass. for People with Medicare and MassHealth under 65
• Parents’ Guide to Health Insurance (English)
• Young Adult’s Guide to Health Insurance (English)

Learn about private foundations that provide financial assistance for people with cystic fibrosis and their families, including out-of-pocket medical expenses and financial hardship.

• Bonnell Foundation Medical Assistance Program: https://thebonnellfoundation.org/financial-assistance/
• Boomer Esiason Foundation Grants: https://www.esiason.org/
• Catastrophic Illness in Children Relief Fund (MA residents): https://www.mass.gov/catastrophic-illness-in-children-relief-fund-cicrf
• Claire’s Place Foundation: https://clairesplacefoundation.org
• Co-Pay Relief Program: https://copays.org/funds/cystic-fibrosis/
• Creating Sunshine Forever: https://www.creatingsunshineforever.org/
• Ellie’s Army: https://elliesarmy.org/
• HealthWell Foundation: https://www.healthwellfoundation.org/
• Keep Swimming Foundation: https://www.keepswimmingfoundation.org/
• MBA Open Doors Foundation: https://www.mbaopensdoors.org/ourhospitals/apply-for-a-grant/
• Patient Advocate Foundation: https://www.patientadvocate.org/
• Piper’s Angels - Urgent Financial Assistance: https://www.pipersangels.org/urgent-financial-assistance
• The Assistance Fund: https://enroll.tafcares.org/
• The Cystic Dreams Fund: https://www.cysticdreamsfund.com/request-help.html
• The Joey Fund (MA residents only): https://joeyfund.org/
• United Health Children’s Foundation Grant: https://www.uhccf.org/
• Vivian Lee Foundation: https://vivisvintage.com/pages/family-assistance-program

Many medication manufacturers provide financial assistance to patients who are underinsured or uninsured to provide access to prescribed medications. Some of these assistance programs include additional incentives, such as supplying patients with vitamins or supplements.

• Arikace (amikacin liposome inhalation suspension): https://www.arikayce.com/resources/patient-support/
• Cayston Assistance Programs: https://www.cayston.com/assistance-programs
• CREON’s CF Care Forward: https://www.creonhcp.com/cfcareforward
• Kitabis Pak (tobramycin inhalation solution): https://www.kitabis.com/patient-access/CoPayAssistance
• My AbbVie Assist: https://www.abbvie.com/patients/patient-support/patient-assistance.html
• Pancreaze Savings and Support Program: https://pancreaze.com/savings-and-support/
• Pertzye® Programs
  • Pertzye Care | Co-pay Assistance
  • Pertzye EPI Nutrition Program
  • Pertzye Uninsured Patient Assistance Program
  • Pertzye Infant Starter Program
• Pulmozyme (dornase alfa) Financial Assistance: https://www.pulmozyme.com/patient/financial-support/assistance-options.html
• Tobi (tobramycin inhalation solution) Copay Assistance: https://www.activatethecard.com/tobi/copay.html
• Tobi Podhaler (tobramycin dry powder) PodCare+ Program: https://www.tobipodhaler.com/podcare-support-and-savings
• Vertex Guidance and Patient Support: https://www.vertexgps.com/
• ZenPep’s Live2Thrive: https://www.live2thrive.org/

Information and resources for people with cystic fibrosis and their families related to food insecurity, utilities, employment, and free legal information. The fact sheets below were developed by the Cystic Fibrosis Foundation.

• Broadband Internet Access
• CF Foundation Resource Database | Self-Guided Search Tool
• Employment and CF
• Food Insecurity
• Guide to “Healthy” Web Surfing
• Transportation for CF Care
• Utilities

Learn about recommended accommodations for students with cystic fibrosis, types of plans that ensure students receive accommodations, and available scholarships for those who decide to pursue education beyond high school.

• Accommodations for College | Cystic Fibrosis Foundation
• CF in the Classroom
• CF Scholarships 2024-25
• Creating Routines to Go Back to School
• Day-to-Day: School and CF
• A Teacher’s Guide to Cystic Fibrosis

People with cystic fibrosis have a unique experience when it comes to sexual and reproductive health. Find resources to help answer your questions about health, puberty, pregnancy, fertility, contraception, becoming a parent, sexually transmitted infections, and more.

• Family Planning | Cystic Fibrosis Foundation: Deciding whether to have a child when you have cystic fibrosis requires a great deal of planning. Fortunately, addressing some key questions can help you navigate the family planning process. Find numerous topics including contraception, assisted reproduction, adoption, and surrogacy.
• Center for Young Women's Health | Cystic Fibrosis Guides for Sexual and Reproductive Health
• CFReSHC | Cystic Fibrosis Reproductive & Sexual Health Collaborative
• Female Reproductive Health/Fertility and Cystic Fibrosis: Patient Information
• Fertility in CF for Females and Males | Cystic Fibrosis Foundation
• IVF Grant | The Boomer Esiason Foundation
• Parenting as an Adult With CF | Cystic Fibrosis Foundation
• Parenting as an Adult with Cystic Fibrosis: Balancing Family Life and CF handout
• Parenting as an Adult With CF: Talking with Your Child About CF
• Parenting as an Adult with CF: Understanding Child Temperament and Development
• Pregnancy and CF | Cystic Fibrosis Foundation
• Diabetes, Pregnancy, and Cystic Fibrosis

People with cystic fibrosis (CF) may be eligible for wishes from wish-granting organizations. Learn about different wish opportunities and eligibility criteria. Various experiences and resources are available for individuals with CF of varying ages.

• A Wish Come True (MA & RI residents, ages 3-18): https://www.awish.org/
• Make a Wish (national, ages 2.5-18): https://wish.org/
• Take a Breather (BCH patients, ages 3+): https://www.takeabreatherfromcf.org/
• The Sisters Wish (MA, NH, and ME residents, ages 18-30): http://www.thesisterswish.org/