Cystic Fibrosis Education and Resources
When you/your child is coping with the lifelong challenges of cystic fibrosis, you need all the support you can get. The following resources will help you understand doctor-speak and link you to additional health information.
Much has changed in the last couple of years. To learn more about coverage, visit our health insurance information pages.
Learn more about the Affordable Care Act and the healthcare exchange at HealthCare.gov.
Did you know you might be eligible for additional assistance through the State of Texas? The CSHCN Services Program was specifically designed for children with special health-care needs, but it also includes persons of all ages who have cystic fibrosis. You can learn more here.
Cook Children's Health Plan is designed to help parents of children who are at Cook Children's, or would like to have him or her seen at Cook Children's, but might not qualify for Medicaid and are unable to afford any other type of health insurance. We are happy to help. For more information or assistance getting your child covered right away, click here now.
Cook Children's Retail Pharmacy offers payment assistance for families who qualify. You can speak to a pharmacist by calling 682-885-3142. We also invite you to learn more here.
Prescription assistance programs – a listing of different programs that can help with cost of medications can be found here.
The NBS benefits program offers assistance through the State of Texas for qualified residents – click here to learn more.
Cystic fibrosis organizations
Sometimes it's hard to tell which information on the Internet is actually helpful. We trust the following sites to provide useful information to parents, kids, teens and adults seeking more information on cystic fibrosis:
Boomer Esiason Foundation: foundation information, fund raising, events, and newsletter
Practical parenting tools for children with CF
Cystic Fibrosis Foundation: Wealth of information on CF and CF research. Standards of care are listed on this website.
Cystic Fibrosis Worldwide: Newsletters, links, updates on CF. International platform for the exchange of information.
International CF Adult Organization: For adults with CF throughout the world
Resources and knowledge on CF
News and information on pulmonary issues
My Cystic Fibrosis: Helpful information on CF
Cystic Fibrosis Research Inc: Help to fund and sponsor CF research. Provide educational programs and personal support
General information on CF and children's health
National Library of Medicine: Articles on CF research and national medical news
Medline Plus: Articles on CF research and national medical news
CF Chef high calorie recipes designed for patients with CF
Reach for the Stars: Provides resources, knowledge, and support to those with CF
Cystic-L: Information and support. Free email service dedicated to the exchange of information and support on CF.
Pacer: MN foundation for chronically ill patients and families.
"Support. Education. Hope." For those with CF
Star Bright Foundation: Provides education, family activities, and entertainment to seriously ill children
Breathing Room: "The art of living with CF"
- DFW CF Families Facebook Page
Connecting DFW CF families on facebook
The CF Legal Information Hotline provides free information about the laws that protect the rights of people with cystic fibrosis. You can learn more here.
CF scholarship information
If you are headed to college, in college, or are returning to finish your degree or add a new one, you'll find a great resource here.
To catchup and stay up on all the latest happenings in the CF world and at the Cook Children's Cystic Fibrosis Center, be sure to check our newsletters.
We're here to help.
If you have been told your child might have CF, we know you have lots of questions. We can help. To schedule an appointment, refer a patient or speak to our staff, please call our offices at 682-885-6299. After hours and on weekends/holidays, call 682-885-4000 and ask the operator to page the pulmonologist on call.