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

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

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

MI Rare Coalition

We are dedicated to building coalitions that unite all rare community members through activities that raise public awareness, provide opportunities for advocacy, and educate stakeholders about impactful public policies.
Managing rare diagnoses is complicated and often requires support from multiple healthcare teams, often at separate hospital systems. This problem is made worse throughout rural America, where the challenges of life with a rare disease are made worse by a lack of access to healthcare services, deficits in educational support, and non-existent social support programs.
https://mi-rare.org/