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

Michigan Pulmonary Disease Community

The Cystic Fibrosis Support Network of Michigan (formerly MPDCI) is a 501.c.3 non-profit Michigan Charity dedicated to providing direct and indirect services to enhance the lives of people with cystic fibrosis, their families, and the communities that support them. They work year-round providing support and financial assistance through our services and programs. http://www.mpdci.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

InsureKidsNow.gov

InsureKidsNow.gov provides information about Medicaid and CHIP services for families who need health insurance coverage. These programs are designed to be affordable for families who are not able to afford health insurance coverage in the private market or do not have coverage available to them. Even if you’ve been turned down in the past, you may be able to get health coverage for your child now. http://www.insurekidsnow.gov

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

Life With Every Breath: A Blog About Life With Cystic Fibrosis

Katherine Russell is co-editor of With Every Breath: stories by and about people living with cystic fibrosis. The purpose of her blog, as with her book, is to to offer inspiration, insight, and hope to those living with the disease by reaching out with accounts of personal experience.
http://lifewitheverybreath.com/blog

Paint Her in Color

Paint Her in Color helps parents and other caregivers paint their children with special health care needs “in color.” What does this look like? Embracing everything we can to help our children lead long and full lives. Refusing to define our children solely by their health. Balancing daily care with the unexpected messiness and vibrancy of childhood. Nurturing the blessings that come alongside the battles. And learning to treat ourselves with kindness.
http://www.paintherincolor.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