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About Us

Founded in 1975, Cystic Fibrosis Research, Incorporated (CFRI) is a 501(c)(3) charitable organization. EIN #51-0169988

CFRI received 4 stars from Charity Navigator and is recognized as a top-rated charity by GreatNonprofits.

Our Mission

Cystic Fibrosis Research, Incorporated funds research, provides educational and personal support, and spreads awareness of cystic fibrosis (CF), a life-threatening genetic disease.

Our Vision

As we work to find a cure for cystic fibrosis, CFRI seeks to inform, engage and empower the CF community to reach the highest possible quality of life.


CFRI Provides Vital
Education and Resources

  • CFRI’s annual National Cystic Fibrosis Family Education Conference brings together those impacted by CF – including patients, families, care teams, and scientists – with experts in the field of CF for a weekend of information and support. CFRI's 30th National Cystic Fibrosis Family Education Conference is scheduled from July 28, 2017 to July 31, 2017 at Sofitel San Francisco Bay. Register Now! Click here.

  • CFRI’s CF Community Voices Video Podcast provides a minimum of two video and audio podcasts monthly, providing cystic fibrosis-related insights from both “professional” and “personal” CF experts. Topics have included CF-related reproductive health, exercise, GI issues, and mental health. To watch and/or download episodes, click here or go to http://cfri.podbean.com/

  • "CFRI Community," CFRI’s newsletter, is delivered to 15,000 physical and 17,000 digital addresses across the globe four times per year; the Spanish-language edition, "CFRI Comunidad," is distributed twice annually. To download copies of our newsletter, click here. To receive news updates by mail or email, click here.
  • CFRI's bilingual DVDs, "Putting A Face on Cystic Fibrosis" ("Demostrando La Cara de Fibrosis Quística") and "The Pediatric Cystic Fibrosis Education Conference" ("La Conferencia Pediatrica de Educación Fibrosis Quística") are free to all who request it. To request DVDs, please email cfri@cfri.org

  • Other CFRI publications, such as "CF in the Classroom" and "Fibrosis Quística en la Clase," are mailed at no cost to those who need them. To receive copies, please go to http://www.cfri.org/formbooklets.shtml

  • The CF Discovery Series was held through 2016, and presented interactive sessions on a variety of vital CF topics. Sixteen recorded Discovery Series presentations covering a broad range of topics are available on CFRI’s YouTube channel. To watch, click here.

CFRI Funds Innovative Research

  • Research is conducted at the finest institutions nationwide, including Stanford University, the University of California (UC) San Francisco, UC San Diego, UC Davis, University of Southern California, San Diego State University, University of Washington Seattle, University of Alabama Birmingham, University of Cincinnati College of Medicine, and Children’s Hospital Oakland Research Institute. For a list of recently funded research, click here.

CFRI Provides Family and Community Support

  •    Our annual "Embrace" Mothers Retreat is scheduled May 5 through May 7, 2017 at Vallombrosa Center in Menlo Park, California. This incredible weekend includes art, yoga, journaling, storytelling, CF resources, music, support, good food, a rousing drum circle, and respite time with women who share the CF path. $150 includes two nights in a single occupancy room, meals, workshops, and retreat events. $75 registration includes meals, workshops and retreat events, but no room. To register, click here. For more information, call 855.237.4669, or email cfri@cfri.org Made possible through grants from Vertex Pharmaceuticals, AbbVie and Gilead Sciences.

  •      CFRI provides two monthly CF Caregivers Support Groups, which are facilitated by a CF social worker. This support group is open to those able to participate in person, as well as by phone to participants nationwide. Our CF Caregivers Support Groups are held every third Tuesday of the month. Parents of Children meet from 5:00 pm – 6:00 pm PST, while Parents/Spouses/Partners of Adults meet from 6:00 pm – 7:00 pm PST. Both Meetings are held in the 1st Floor Conference Room, 730 Welch Rd, Palo Alto, CA (Parking only accessible from Vineyard Lane – Enter from back). To participate by phone: 1-650-736-4444 –  Access code: #070111028

  • CFRI provides financial support for individual counseling to individuals with cystic fibrosis as well as their family members and caregivers. CFRI will pay up to $120 per session for five sessions with a licensed therapist in your community. This program is available nationwide. For more information, click here.

  •  Our annual CF Summer Retreat provides support, education and fun in a safe environment for people with CF, as well as their friends and family. This year's CF Summer Retreat will take place at Vallombrosa Center in Menlo Park, California from July 30th to August 5th. Participants will look forward to educational presentations, art, yoga, rap sessions, support, community and more! For more information or to register, click here.

Thankful

I first learned of CFRI in 1989, when my daughter Lucy was born and diagnosed with cystic fibrosis. My husband and I attended our first conference the following year and have been “regulars” ever since. The knowledge, as well as the comfort we have received over the years from CFRI’s annual conference, newsletter, Discovery Series, and countless other resources has allowed us to be informed advocates for our daughter. The cutting-edge research that CFRI funds annually has led to significant breakthroughs in the treatment of CF, and as a result benefits Lucy and the entire CF community by providing hope and bringing us closer to a cure. I served on the Board of Directors for six years and know first hand how dedicated the CFRI staff, volunteers, and researchers are to improving the lives of those living with cystic fibrosis. CFRI is a lifeline to everyone affected by CF!

Bridget Barnes
Mother of a Young
Adult with CF
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