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

Aimed Alliance

Aimed Alliance is a 501(c)(3) non-profit organization that seeks to protect and enhance the rights of health care consumers and providers. They advocate on behalf of both consumers and providers independently, and they work to preserve the practitioner-patient relationship. Staffed by attorneys, they analyze legal, regulatory, and ethical issues related to health care access and delivery. They account for the variety of statutes and regulations that govern health care in the U.S., politics, and the often-competing interests of stakeholders.
Their organization educates health care practitioners and consumers on their legal rights regarding access to medically-necessary treatments, including through our “Know Your Rights” campaign. Additionally, they educate insurers and employers on the importance of providing fair and reasonable access to medically-necessary treatments and services.
https://aimedalliance.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

Cystic Fibrosis Lifestyle Foundation

The Cystic Fibrosis Lifestyle Foundation (CFLF) was founded in 2003 by Brian Callanan. From an early age Brian knew he wanted to help others who struggled with the challenges of living with CF. Through his personal experience he learned the importance and value of exercise, recreation and positive mindset for his health. Brian had the vision and determination to learn from his life experiences,and challenges and create an organization that would benefit others. CFLF thrives today awarding grants to over 150 CF patients since 2007. With the vision of “Living Stronger! Living Longer!” Brian aims to bring greater focus to the empowerment and success of those living with CF.
Visit the CFLF website

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

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 provide counsel 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

CF Services

Cystic Fibrosis Services, Inc. (CF Services) is a wholly-owned subsidiary of the Cystic Fibrosis Foundation. Cystic Fibrosis Services was established in 1988 as a specialty pharmacy to provide availability and access to cystic fibrosis medications, as well as assistance with the complex insurance issues faced in obtaining these medications. The Bonnell Foundation is honored to be community partners with CF Services. http://www.cfservicespharmacy.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

Patient AirLift Services

Patient AirLift Services arranges free air transportation based on need to individuals requiring medical care and for other humanitarian purposes. Our network of volunteer pilots provide this service without compensation using their own or rented aircraft. In no case are fees of any kind charged for these services. Generally the individuals who utilize our services have limited financial resources or are receiving diagnosis, treatment or follow-up for various types of acute or chronic illnesses or conditions that make it either financially impossible or otherwise infeasible to use public commercial or private charter transportation. http://www.palservices.org

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

CFCareForward Sponsorship

Recognizing the financial burdens that exist for many CF families, Abbott developed the CFCareForward Scholarship to honor young adults with CF as they pursue goals of higher education. Since 1993, scholarship funds have been awarded through this program totaling more than $2.2 million.
http://www.cfcareforwardscholarship.com

Goodness Girl

Cystic fibrosis mom Michele Ciancimino is a Certified Holistic Health Coach / Certified Fitness Nutrition Specialist. Whether you’re experiencing a health challenge and need some personal attention, or you just want to soak up some goodness in the form of healthy lifestyle tips and recipes, I’m excited to welcome you to the community.
https://www.goodnessgirl.com

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

MedlinePlus

MedlinePlus is the National Institutes of Health’s Web site for patients and their families and friends. Produced by the National Library of Medicine, it brings you information about diseases, conditions, and wellness issues in language you can understand. MedlinePlus offers reliable, up-to-date health information, anytime, anywhere, for free. You can use MedlinePlus to learn about the latest treatments, look up information on a drug or supplement, find out the meanings of words, or view medical videos or illustrations. You can also get links to the latest medical research on your topic or find out about clinical trials on a disease or condition, including Cystic Fibrosis.
http://www.nlm.nih.gov/medlineplus

Miles for Cystic Fibrosis

Miles for Cystic Fibrosis was founded in 2007 by two marathon-running pediatric pulmonologists who recognized the efforts of their CF patients to survive were similar to the effort required to train for a marathon. Originally raising money for other organizations supporting CF patients, in 2017 M4CF started the BreatheStrong exercise grant program to encourage a physically active lifestyle for people living with CF. Over 100 BreatheStrong grants have been made for physical activities and equipment, mostly in the Southeast. The mission of M4CF is to help people with CF run their best race to a longer, stronger life.

With the onset of the COVID-19 pandemic, M4CF adapted by creating a Critical Needs Assistance program to help CF families financially impacted by the pandemic with basic needs like food and current utility payments.
https://www.milesforcf.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

HRSA Newborn Screening (HRSA)

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