Resources

Local and online support groups can be a great help as you navigate life with ILD. Support groups have many benefits:

• Talking can help reduce stress and anxiety about your condition.
• Communication can ease the feeling of loneliness that often comes with a new diagnosis.
• It can be good to be around people who know what you’re going through.

Find a support group:

• Ask your healthcare team if a local support group exists.
• Join a support group, or start your own.
• Check with area medical centers and hospital systems for resources.
• Support is also available online.

Support Groups

The Pulmonary Fibrosis Foundation (PFF) has local, virtual, and telephone-based support groups for people living with lung disease and their caregivers. The groups talk about worries or problems in living with lung disease. The goal is to help people live a better life. Other support groups include:

• PF Warriors: PF Warriors is an international online support group. It was formed by volunteers for people with pulmonary fibrosis (PF), ILD, and other lung diseases. Every month, there are in-person and online meetings.
• PF Warriors on Facebook: The PF Warriors Facebook page shares websites and news articles relevant to PF, ILD, and other lung diseases. It also provides up-to-date information on PF Warriors and highlights current projects.

Information from Medication Manufacturers

You can find information from companies that make FDA-approved medications used to treat idiopathic pulmonary fibrosis (IPF). These websites may help you understand more about ILD and related medications:

• Nintedanib (Ofev)
• Esbriet

CHEST Foundation Resources

• Pulmonary Fibrosis
• Pulmonary Fibrosis Patient Guide (PDF)

These organizations provide information on specific types of ILD and lung health and lung disease:

• Lung disease and lung health:
  • American Thoracic Society
  • British Lung Foundation
• Lymphangioleiomyomatosis: The LAM Foundation
• Polymyositis: The Myositis Foundation
• Pulmonary fibrosis: Pulmonary Fibrosis Foundation
• Rheumatoid Arthritis: Arthritis Foundation
• Sarcoidosis: Foundation for Sarcoidosis Research
• Scleroderma: Scleroderma Foundation
• Sjögren’s: Sjögren’s Foundation
• Vasculitis: Vasculitis Foundation

Get up-to-date information, research, and local support: 

• Lung Health A-Z 
• Sarcoidosis
• Lymphangioleiomyomatosis (LAM)
• Hypersensitivity Pneumonitis
• Cryptogenic Organizing Pneumonia (COP)

Find more resources about ILD and related conditions:

• Coexisting Conditions (PDF)
• ILD Family Tree (PDF)