There is a multitude of organizations working to support the cystic fibrosis community, as well as a variety of tools and information available to help people with CF not just live, but thrive.
Links
General Resources
Cystic Fibrosis Foundation
CysticFibrosis.com
Cystic Fibrosis Research Inc.
Cystic-L
Medline Plus: Cystic Fibrosis
Antibiotics
Medline Plus: Antibiotics
CF Community
Breathing Room
CF Living
CF Roundtable (U.S. Adult Cystic Fibrosis Association Inc.)
CFVoice.com
Conncoll International Cystic Fibrosis Support Group
CysticFibrosis.com
Cystic Fibrosis Lifestyle Foundation
Cystic Fibrosis Research Inc.
Cystic-L
CysticLife.org
Club CF
Heroes Of Hope
Second Life and CF University
Second Wind Lung Transplant Association Inc.
Well Spouse Association
Yahoo Group on Parenting a CF Child
Yahoo Group on CF Infants and Toddlers
CF Care Centers
Cystic Fibrosis Foundation: Find a Care Center
Cystic Fibrosis Foundation: Care Center Data
Cystic Fibrosis Foundation: Patient Registry Report
CysticFibrosis.com: U.S. CF Care Centers and CF Organizations Around the World
Clinical Trials
National Institutes of Health Clinical Trials Registry
Cystic Fibrosis Foundation: Online search for CF clinical trials
Cystic Fibrosis Foundation: Videos of participants, families and doctors talking about clinical trials
Cystic Fibrosis Foundation: Frequently asked questions about clinical trials
Cystic Fibrosis Foundation: Drug Development Pipeline
Disability
Social Security Disability Insurance
Drug Therapies
Cystic Fibrosis Foundation: Drug Development Pipeline
Exercise and Fitness
Cystic Fibrosis Foundation: Staying Healthy
Medline Plus: Exercise and Physical Fitness
Centers for Disease Control: How much exercise do you need?
Centers for Disease Control: Body and Mind: Physical Activity Info for Kids
Gene Therapy
National Human Genome Research Institute (Genetics and CF)
Human Genome Project
Genetics
Cystic Fibrosis Mutation Database
Health Insurance
CF Foundation's Patient Assistance Resource Library
Healthcare.gov
Medicare
State Children’s Health Insurance Program
Legal Issues
CF Legal Information Hotline
Nutrition
Cystic Fibrosis Foundation: Nutrition for Teens with CF
Cystic Fibrosis Foundation: Grab ‘N Go! Meal & Snack Ideas for People with CF
Nemours Center for Children’s Health Media: Cystic Fibrosis and Nutrition
CysticFibrosis.com: Recipes from the CF Community
Organ Donation
Medline Plus: Organ Donation
Donate Life America
Organ and Tissue Donation Initiative
United Network for Organ Sharing
Patient Assistance Programs
Medicare
State Children’s Health Insurance Program
Social Security Disability Insurance
Supplemental Security Income
State Health & Income Assistance Program Database
CF Services Pharmacy
CF Patient Assistance Foundation
Drug Manufacturer Assistance Programs
Rx Assist Prescription Drug Discount Program
Partnership for Prescription Assistance
Patient Access Network Foundation
Scholarships
Boomer Esiason Foundation Scholarship Program
SolvayCARES Scholarship
Elizabeth Nash Foundation
Transplantation
Medline Plus: Lung Transplantation
HelpHOPELive
Patient Airlift Services
Children’s Organ Transplant Association
Second Wind Lung Transplant Association
Transplant Recipients International Organization
Lungs for Life Foundation
We want your help!
If you find a great cystic fibrosis resource and it is not listed in our cystic fibrosis online resource section, please e-mail us at info@esiason.org and we will add it to our list.
