Cystic Fibrosis Foundation

Cystic Fibrosis Foundation (CFF) is a non-profit organization based in the United States dedicated to improving the quality of life for people with cystic fibrosis (CF). Founded in 1955 by parents of children with CF, the foundation plays a pivotal role in the research, care, and advocacy for those affected by this genetic disorder. Cystic fibrosis is a life-threatening condition that affects the lungs and digestive system, leading to severe respiratory and nutritional problems.

History

The Cystic Fibrosis Foundation was established by a group of parents who aimed to advance understanding of CF, a disease that was little understood at the time. Their efforts have significantly contributed to the research and development of treatments that have transformed CF from a fatal childhood disease to a condition where many people with CF can lead longer, more fulfilling lives.

Mission and Vision

The mission of the CFF is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care. The foundation's vision is "a world without cystic fibrosis."

Research and Development

A significant portion of the foundation's efforts is directed towards research and development. The CFF has been instrumental in funding groundbreaking research and has played a critical role in the development of CFTR modulators, a class of drugs that target the underlying cause of CF. These advancements have significantly improved the quality of life for many people with CF.

Care Centers

The Cystic Fibrosis Foundation accredits more than 120 care centers and 53 affiliate programs across the United States. These centers provide expert care and specialized disease management to people with CF. The foundation's care center network is a cornerstone of its strategy to improve the health and well-being of the CF community.

Advocacy

The CFF also engages in advocacy efforts to ensure that policies and regulations support the needs of the CF community. This includes advocating for access to high-quality care, affordable treatments, and robust research funding. The foundation works at both the state and federal levels to protect the interests of people with CF and their families.

Fundraising and Awareness

Fundraising events and awareness campaigns are vital to the foundation's ability to fund research and provide services. The CFF organizes a variety of events, including Great Strides, a nationwide walk that raises funds for CF research and care. These events not only raise funds but also increase awareness about CF and the foundation's work.

Impact

The efforts of the Cystic Fibrosis Foundation have led to significant advancements in the treatment and understanding of CF. Life expectancy for people with CF has increased dramatically over the past several decades, and the quality of life for those with the disease has improved. The foundation's work has been a driving force behind these achievements.

Conclusion

The Cystic Fibrosis Foundation continues to be a beacon of hope for the CF community. Through its commitment to research, care, and advocacy, the CFF is making strides towards its ultimate goal of finding a cure for cystic fibrosis. The foundation's work not only benefits those with CF but also sets a precedent for how diseases can be tackled through concerted effort and innovation.

NIH genetic and rare disease info

• NIH info on Cystic Fibrosis Foundation

Cystic Fibrosis Foundation is a rare disease.