Cystic Fibrosis Resources

Health information, services, advocacy, organizations, blogs and more.

CFEN

In response to these challenges, in 2017 the Cystic Fibrosis Engagement Network (CFEN) launched as a project of the Alliance for Patient Access (AfPA), to serve as a central voice of patients advocating for policies that further patient access to approved CF therapies. In so doing, CFEN seeks to serve as leading educational and advocacy organization focused on policy matters impacting CF patient access to optimal care.

Under the leadership of its steering committee members, CFEN is the home to vibrant coalition of CF patient advocates with the mission of:

1. Recruiting and engaging CFEN patients and healthcare providers as policy advocates

2. Developing educational materials highlighting access barriers to optimal care

3. Increasing public awareness through engaging the media

4. Fostering interactions on policy issues across social media platforms

5. Advocating at the federal, state and health plan level for policies that support patient access
https://engagecf.org

Cystic Fibrosis News Today

Cystic Fibrosis News Today is the web’s leading publisher of CF-related news and perspectives, geared specifically toward patients and caregivers. Each month, the website reaches the entire CF patient community in the US, functioning as a digital resource for the latest science, research and advocacy news, as well as impactful patient and caregiver perspectives.
https://cysticfibrosisnewstoday.com

Children’s Special Health Care Services

Children’s Special Health Care Services (CSHCS) is a program within the Michigan Department of Community Health. It is for children and some adults with special health care needs and their families, including families with CF. Find out about the program in a podcast on the Oakland County website. http://www.michigan.gov

The Rock CF Foundation

Founder Emily Schaller is a rock star in the CF world. She is featured in the Portraits of Cystic Fibrosis calendar. Nationally recognized as an advocate, Emily and Rock CF supporters and volunteers across the globe share in her passions of public speaking, performing, the arts, running and biking to fulfill her mission to “ROCK CF.” http://www.letsrockcf.org

Boomer Esiason Foundation

The Boomer Esiason Foundation is a dynamic partnership of leaders in the medical and business communities joining with a committed core of volunteers to heighten awareness, education and quality of life for those affected by cystic fibrosis, while providing financial support to research aimed at finding a cure.
https://www.esiason.org

Cystic Fibrosis Research Institute (CFRI)

The Cystic Fibrosis Research Institute seeks to be a global resource for the cystic fibrosis community while pursuing a cure through research, education, advocacy, and support. CFRI funds innovative research at medical and academic institutions nationwide while providing educational and support services to the national – and international – CF community. These include an annual conference, podcasts, educational resources, as well as financial support for counseling, mindfulness classes, and multiple support groups. All are offered online and at no cost. CFRI also advocates at the state and federal level to ensure access to CF therapies and quality care. CFRI is your partner in living.
https://cfri.org/

Emily’s Entourage (EE)

Emily’s Entourage (EE) is an innovative 501(c)3 foundation that accelerates research for new treatments and a cure for nonsense mutations of Cystic Fibrosis (CF), a fatal genetic disease primarily affecting the lungs and digestive system. Since 2011, EE has awarded millions of dollars in research grants, launched a CF gene therapy company recently acquired by a large pharmaceutical company, and led worldwide efforts to drive high-impact research and drug development. The organization has been featured in national media, including The New York Times, STAT, CNN, People and more. Learn more at https://ww.emilysentourage.org

Harness Dickey

Harness Dickey’s team of 100+ patent and trademark attorneys serves businesses, universities and entrepreneurs around the world in all areas of intellectual property law. Founded in Michigan in 1921, the firm is also proud to providecounsel and support to numerous non-profit organizations, including groups that support veterans, the visually impaired, food-insecure families, and other causes in our communities. Please visit www.hdp.com and follow @harnessdickey for more information.
https://www.hdp.com

Donate Life

Donate Life America is a 501(c)3 not-for-profit alliance of national organizations and state teams across the United States committed to increasing organ, eye and tissue donation. Donate Life America manages and promotes the national brand for donation, Donate Life, and assists Donate Life State Teams and national partners in facilitating high-performing donor registries; developing and executing effective multi-media donor education programs; and motivating the American public to register now as organ, eye and tissue donors.
http://donatelife.net

Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation provides funding for and accredits more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF. Located at teaching and community hospitals across the country, these care centers offer the best care, treatments, and support for those with CF. Search by state or zip and find a care center or CF-sanctioned hospital near you. http://www.cff.org

CF Roundtable

CF Roundtable is a non profit run by 12 people with CF. The purpose of the CF Roundtable is to provide a source of information for CF adults regarding the basis, nature and progression of the disease, as well as the latest treatment and research to fight it. It also offers a forum for CF adults to communicate with each other. Take a look at the site, and then consider subscribing. You can now receive CF Roundtable free as an online PDF, a hard copy, or both.
http://www.cfroundtable.com

HRSA Newborn Screening (HRSA)

Newborn screening information center.
https://newbornscreening.hrsa.gov

MVW Nutritionals

MVW Nutritionals is a privately held company, with the mission of providing leading edge nutritional supplements and vitamins for persons who have cystic fibrosis and other gastrointestinal disorders. Our goal is to deliver exceptional product profiles, coupled with outstanding service. We believe that quality in what we do, at a reasonable price are important, and are committed to this mission.
https://mvwnutritionals.com

Claire’s PlaceFoundation

At the age of 13, Claire Wineland founded Claire’s Place Foundation to provide support to children and families affected by cystic fibrosis (CF). Claire lived with CF her entire life. Claire was an activist, speaker, philanthropist, and author. She committed her life to traveling the world and speaking about her experience, from the beautiful and humorous, to the painful parts of her life. She inspired all who followed her journey and broke down barriers for those who live every day with a chronic illness.fibrosis and other gastrointestinal disorders. Our goal is to deliver exceptional product profiles, coupled with outstanding service. We believe that quality in what we do, at a reasonable price are important, and are committed to this mission.
https://clairesplacefoundation.org