ILD Patient Resources

Support groups

Living With a Lung Disease Support Groups (American Lung Association)
Pulmonary Fibrosis Foundation Support Groups

Resources for specific ILDs

Connective tissue disease-associated ILD
(dermatomyositis, polymyositis, mixed connective tissue disease, granulomatosis with polyangiitis, Sjӧgren's syndrome, scleroderma, sarcoidosis, rheumatoid arthritis, Raynaud's syndrome)
American Autoimmune Related Diseases Association
Scleroderma Foundation

Familial pulmonary fibrosis
National Jewish Health
Christine Garcia, MD, PhD, Columbia University

Idiopathic pulmonary fibrosis (IPF)
Pulmonary Fibrosis Foundation

Lymphangioleiomyomatosis (LAM)
The LAM Foundation

Sarcoidosis
Foundation for Sarcoidosis Research
UCSF Sarcoidosis Research Program

Medication

Mayo Clinic Drugs and Supplements
MedlinePlus Drugs, Herbs and Supplements
Esbriet
Ofev

Conditions associated with ILD

Gastroesophageal reflux disease (GERD)
International Foundation for Functional Gastrointestinal Disorders
MedlinePlus: GERD

Pulmonary hypertension
Pulmonary Hypertension - High Blood Pressure in the Heart-to-Lung System
Pulmonary Hypertension Association

Sleep and sleep apnea
American Sleep Apnea Association
MedlinePlus: Sleep apnea
National Sleep Foundation

Smoking
Tobacco Free California
UCSF Stop Smoking Classes

ILD symptoms and complications

Anxiety and depression
Freedom From Fear
UCSF Osher Center for Integrative Health

Deconditioning
California Society for Pulmonary Rehabilitation

Dyspnea (shortness of breath)
Pulmonary Education and Research Foundation
Better Breathers Club Program (American Lung Association)

Hypoxemia and supplemental oxygen
Emphysema Foundation for Our Right to Survive (focuses on COPD but provides useful information on oxygen equipment, traveling with oxygen, etc.)

Weight loss or gain
Aim for a Healthy Weight, National Heart, Lung, and Blood Institute
Weight Watchers

General lung health information

American Lung Association
National Heart, Lung, and Blood Institute
National Library of Medicine
UpToDate.com

Caregiver support

Family Caregiver Alliance

Resources for financial hardship

Medicaid
National Rehabilitation Information Center
NeedyMeds
Partnership for Prescription Assistance
Social Security Administration: Disability Benefits
Social Security Administration: Employment Support Programs

Research studies and getting involved

ClinicalTrials.gov
Foundation for Sarcoidosis Research
Pulmonary Fibrosis Foundation
Rare Diseases Clinical Research Network
Scleroderma Foundation
The LAM Foundation
UCSF Interstitial Lung Disease Clinical Research

Lung transplantation

American Society of Transplantation
UCSF Lung Transplant Program
United Network for Organ Sharing

Advance care planning

End of Life Resources, AARP
National Hospice and Palliative Care Organization
Tool Kit for Health Care Advance Planning, American Bar Association

UCSF Health medical specialists have reviewed this information. It is for educational purposes only and is not intended to replace the advice of your doctor or other health care provider. We encourage you to discuss any questions or concerns you may have with your provider.

Related clinics

Interstitial Lung Disease (ILD) Program

Berkeley Outpatient Center

400 Parnassus Ave., Sixth Floor, Room A6114
San Francisco, CA 94143

(415) 353-2577

M-F, 8 a.m. - 5 p.m.

Recommended reading

FAQ: Cyclophosphamide

Cyclophosphamide is part of a class of drugs called immunosuppressants that suppress the immune response and reduces inflammation in the lungs. Learn more.

FAQ: Methotrexate

Commonly asked questions regarding Methotrexate including, recommendation, precautions, possible side effects, suggested monitoring and more.

FAQ: Mycophenolate

Commonly asked questions regarding Mycophenolate including recommendation, precautions, possible side effects, suggested monitoring and more.

FAQ: Prednisone

Commonly asked questions regarding Prednisone including, the reason for recommendation, special precautions, possible side effects, monitoring, and more.

GERD in ILD Patients

Many studies have shown a link between GERD & lung disease, including interstitial lung disease (ILD). The reason for this relationship is unclear. Learn more.

ILD Nutrition Manual

Nutrition Manual for Interstitial Lung Disease including, General Guidelines for Eating Healthy, Body Mass Index, Increasing Protein in Your Diet and more.

Pulmonary Hypertension and Interstitial Lung Disease

Pulmonary hypertension, or PH, occurs when blood pressure in the lungs becomes elevated, and can be caused by a thickening of the pulmonary artery walls.

Pulmonary Rehabilitation for ILD Patients

Pulmonary rehabilitation is a comprehensive program for lung disease patients whose symptoms are impacting their everyday activities. Learn more here.

Supplemental Oxygen

Find Supplemental Oxygen Resources including, The Need for Supplemental Oxygen, Your Oxygen Equipment, Oxygen Safety, Traveling With Oxygen, and more.

ILD Patient Resources

Related clinics

Recommended reading

Related conditions

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