The companies and links provided are for informational purposes and not necessarily endorsed by this organization.

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Patient Education Organizations;

• Pulmonary Fibrosis Foundation (PFF)

• PFF Support Group List

• Breathe Support Network #LIVEwithPF

• The Pulmonary Paper

• American Lung Association

• The Cleveland Clinic

• National Heart, Lung, and Blood Institute

• Familial Pulmonary Fibrosis – National Jewish Health

• Every Breath Counts Documentary Film

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Patient Education – Online Blogs

• No Air To Go

• Pulmonary Fibrosis: Clearing the Air

• Patients Like Me – Pulmonary Fibrosis

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Patient Health & Information

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• Webinar: “Interstitial Lung Diseases” with Dr. Robert Kaner, MD and Mr. Bill Vick

• Treatment Options & Medication Assistance

  • Patient Support Program for Esbriet/Pirfenidone 1-844-693-7274

  • Patient Support Program for Ofev/Nintedanib 1-866-OPENDOOR (673-6366)

  • Patient Access Network Foundation 866-316-PANF (7263)

• Exercise Program

• PFT Quick Reference (No Air To Go)

• Clinical Trials (PFF)

• Clinical Trials .Gov

• AARP

• Introduction to Oxygen Cylinders and Accessories (from Sunset Healthcare Solutions)

• Portable Oxygen Concentrator Descriptions, Sales and Rental (Liberty Medical)

• Calculating Oxygen Tank Duration (video)

• Exercise Devices

  • How an Acapella Flutter Valve Clears Your Lungs

  • Acapella Device

  • Pulmonica

 

NOTE:  If you use supplemental oxygen at home, please notify your Electric, Gas & Water companies that you have oxygen in your home should your services be out for any reason, so that they know to restore them ASAP. You can also take this opportunity to notify them of your own special needs.

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Government Agencies

• National Heart, Lung and Blood Institute

• National Institutes of Health (Medline Plus)

• National Library of Medicine (Drug Information)

• FAA List of Approved Portable Oxygen Concentrators for Airline Travel

• TSA Information on traveling through airport security with Portable Oxygen

 

Medical Disability Requirements

• Social Security Administration – “Compassionate Allowances Condition” Idiopathic Pulmonary Fibrosis

• Social Security Administration – Respiratory Listings

 

Finding A Doctor

• Texas Medical Center Institutions

 

Lung Transplant Information and Donor Registration

• Second Wind Lung Transplant Association

• United Network for Organ sharing (UNOS)

• UNOS Patient Materials

• International Transplant Nurses Society Patient Education

• Donate Life Texas

• Life Gift

• Blood Type Information

 

Caregiver Support Organizations

• National Alliance for Caregiving

• Caregiving.com

• PFWarriors.com

 

Terminology

• Abbreviations Used with PF