Cystic Fibrosis

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Information for Patients

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 About CFRI
Cystic Fibrosis Research, Inc. (CFR) was formed in 1975 by a group of parents whose children with CF were not expected to survive their teen years. Our mission is to fund research, provide educational and personal support and spread awareness of cystic fibrosis (CF), a life-threatening genetic disease, while our vision is Inform, engage and empower the cystic fibrosis community to reach the highest possible quality of life as we work towards a cure.

CFRI’s programs have greatly expanded over the past forty-five years to meet the evolving needs of our diverse national and international cystic fibrosis community. We fund innovative CF research at medical centers and universities nationwide. CFRI’s education programs include an annual National CF Education Conference, podcast series, weekly eNewsletter, and online and printed educational materials. CFRI provides psychosocial support programs including counseling services, caregiver and patient support groups, online mindfulness and wellness classes, and retreats for those impacted by CF. Our advocacy and awareness program addresses access issues, as well as policies and legislation that impact the CF community at the state and federal level.

About CF
Learn about cystic fibrosis, its causes, symptoms, diagnosis and treatment.

Cystic Fibrosis and COVID-19 Video Q & A Series
Since the outbreak of COVID-19, CFRI has conducted weekly Question and Answer sessions with Dr. Richard Moss, CF clinician and researcher, who addresses questions submitted by the national CF community on the impact of COVID-19 upon those with cystic fibrosis.

Cystic Fibrosis and Mental Health
A large international study found that those impacted by cystic fibrosis – both individuals with CF and their caregivers – have far higher rates of depression and anxiety than the general population. Addressing mental health issues is vital to physical health and wellbeing.

Cystic Fibrosis Related Diabetes
Cystic Fibrosis Related Diabetes (CFRD) is one of the most common complications of CF, affecting 40% to 50% of all adults with CF. Early diagnosis and treatment are vital for preserving lung function, as uncontrolled CFRD is linked to survival.

Cystic Fibrosis and Sexual Reproductive Health
As individuals with cystic fibrosis are living longer, the issue of sexual and reproductive health is vitally important to address. Dr. Traci Kazmerski, pulmonologist at UPMC Children's Hospital in Pittsburgh, PA, discusses delayed puberty, urinary incontinence, fertility, contraception, parenthood, and other reproductive issues that are increasingly addressed as part of the CF care model.

Cystic Fibrosis and Bone Health
Due to poor absorption, prednisone use, inflammation, and CFTR dysfunction, individuals with CF are prone to early osteopenia and osteoporosis. Dr. Vinayak Jha, pulmonologist the Adult CF Center at California Pacific Medical Center in San Francisco, discusses the impact of CF upon bone health, the importance of monitoring bone density, and available interventions.

Cystic Fibrosis and Hemoptysis
Hemoptysis - the expectoration of blood - occurs with many individuals with CF due to inflammation in the airways. Dr. Paul Mohabir, Director of the Adult CF Center at Stanford discusses the epidemiology, occurrence rates, and treatment options for those experiencing hemoptysis.

Advances in Lung Transplantation
Dr. Rupal Shah and Dr. Jasleen Kukreja, both of UC San Francisco, provide a fascinating presentation reviewing the transplantation process, from the initial evaluation to post-transplant outcomes, for recipients with cystic fibrosis, and provide an overview of the newest innovations in lung transplant care for patients with CF.

Advocacy and Awareness Building
Raising awareness of cystic fibrosis is vital to ensure research funding, the fast-tracking of review of CF therapies by the FDA, and unfettered access to treatment and therapies.

CFRI-Funded Research
CFRI funds innovative research at educational and medical institutions nationwide. CFRI’s investment in new ideas has enabled researchers at well-established academic and medical institutions across the United States to bring new perspectives to the study of this disease.

Other CF-Related Organizations and Resources
CFRI works closely with other CF-related organizations to share resources and support.

ATS Breathing in America Book

The Breathing in America: Diseases, Progress, and Hope compilationbriefly describes respiratory diseases and the progress that is being made in the quest to find their cures. Find the chapter on cystic fibrosis here

ATS Patient Information Series

Twenty Facts About Cystic Fibrosis
Oxygen Therapy
Oxygen Therapy for Children
Pulmonary Rehabilitation

The ATS Patient Information Series is a public service of the American Thoracic Society and its journal the AJRCCM (www.atsjournals.org). The information appearing in this series is for educational purposes only and should not be used as a substitute for the medical advice of one’s personal health care provider.