ILD Patient Resources
Stay informed with these interstitial lung disease (ILD) resources, including support groups, medication information, associated conditions and more.
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
Including dermatomyositis, polymyositis, mixed connective tissue disease, granulomatosis with polyangiitis, Sjӧgren's syndrome, scleroderma, sarcoidosis, rheumatoid arthritis and Raynaud's syndrome.
Familial pulmonary fibrosis
Idiopathic pulmonary fibrosis (IPF)
Lymphangioleiomyomatosis (LAM)
Sarcoidosis
Medication
Conditions associated with ILD
Gastroesophageal reflux disease (GERD)
Pulmonary hypertension
- Pulmonary Hypertension - High Blood Pressure in the Heart-to-Lung System
- Pulmonary Hypertension Association
Sleep and sleep apnea
Smoking
ILD symptoms and complications
Anxiety and depression
Deconditioning
Dyspnea (shortness of breath)
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
Resources for financial hardship
- Medicaid
- National Rehabilitation Information Center
- NeedyMeds
- 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
Advance care planning
Recommended reading
FAQ: Cyclophosphamide
Cyclophosphamide is a medication that suppresses the immune response and reduces lung inflammation. Find answers to common cyclophosphamide questions.
FAQ: Methotrexate
Find answers to common questions about methotrexate, an immunosuppressant, including what to know before taking the drug and potential side effects.
FAQ: Mycophenolate
Get answers to questions about mycophenolate, an immunosuppressant, including what to know before taking the drug, side effects and necessary monitoring.
FAQ: Prednisone
Get information about prednisone, a medication to treat lung inflammation, including precautions, side effects and necessary monitoring.
GERD in ILD Patients
Interstitial lung disease (ILD) may be linked to gastroesophageal reflux disease (GERD). Understand the symptoms of GERD, how it’s diagnosed and treatments.
ILD Nutrition Manual
Check out our nutrition guide for people with interstitial lung disease (ILD). Eating well can help prevent infection and keep your respiratory system healthy.
Pulmonary Hypertension and Interstitial Lung Disease
Pulmonary hypertension (PH) is common in patients with interstitial lung disease (ILD). Get information on PH, including diagnosis and treatments.
Pulmonary Rehabilitation for ILD
Our respiratory therapists provide pulmonary (lung) rehabilitation for people with ILD in the Bay Area. We help reduce symptoms and improve quality of life.
Supplemental Oxygen
Explore our comprehensive guide to using supplemental oxygen, including safety information and travel recommendations.
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.