Interstitial Lung Disease |
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Other Resources
ILD Conditions
Connective Tissue-Related ILD:
(Dermatomyositis, Polymyositis, CREST, Mixed Connective Tissue Disease, Wegener's, Sjogren's, Scleroderma, Sarcoid, Rheumatoid Arthritis, Raynaud's)
American Autoimmune Related Diseases Association
American College of Rheumatology
Familial Pulmonary Fibrosis
Rare Lung Diseases Consortium
Scleroderma Foundation
Idiopathic Pulmonary Fibrosis (IPF)
Coalition for Pulmonary Fibrosis
Pulmonary Fibrosis Foundation
Lymphangioleiomyomatosis (LAM)
The LAM Foundation
Sarcoidosis
Foundation for Sarcoidosis Research
Medication Information
Mayo Clinic Drugs and Supplements Information
MedlinePlus Drugs, Supplements and Herbal Information
Conditions Associated with ILD
Gastroesophageal reflux disease (GERD)
International Foundation for Gastrointestinal Disorders
MedlinePlus: GERD information
Pulmonary hypertension
American Heart Association: Information on pulmonary hypertension
Pulmonary Hypertension Association
Sleep and sleep apnea
American Sleep Apnea Association
MedlinePlus: Sleep apnea information
National Sleep Foundation
Smoking
Better Breathers Clubs
North American Quitline Consortium
Stanford University Smoking Cessation Services
Tobacco Free California
UC Davis Smoking Cessation Services
UCSF Smoking Cessation Services
ILD Symptoms and Complications
Anxiety and Depression
Freedom From Fear
UCSF Osher Center for Integrative Medicine
Deconditioning
California Society for Pulmonary Rehabilitation
Pulmonary Education & Research Foundation: Essentials of Pulmonary Rehabilitation
Dyspnea (Shortness of Breath)
Pulmonary Education and Research Foundation
Better Breathers Clubs
Hypoxemia and Supplemental Oxygen
Emphysema Foundation for our Right to Survive (focuses on COPD, but lots of useful information about oxygen equipment, traveling with oxygen, etc.)
National Home Oxygen Patients Association
Portable Oxygen: A User's Perspective
Weight Loss or Gain
Obesity Education Initiative, National Heart Lung and Blood Institute
UC Davis LifeSteps Weight Management
UCSF Weight Management Program
Weight Watchers
General Health Information
American Lung Association
American Thoracic Society
Mayo Clinic
National Heart Lung and Blood Institute
National Library of Medicine
UpToDate.com
ILD Support Groups
Better Breathers Clubs
Central Valley Pulmonary Fibrosis Support Group, (916) 354-1324 or sandrarock@yahoo.com
Idiopathic Pulmonary Fibrosis Support Group, El Camino Hospital
Living Well With ILD Support Group, UCSF Interstitial Lung Disease Program
Pulmonary Fibrosis Support Group, Stanford Center for Interstitial Lung Disease
Caregiver Support
Family Caregiver Alliance
Living with and Caring for Persons with Chronic Lung Disease Pamphlet
Resources for Financial Hardship
Caring Voice Coalition
Medicaid Information
Medicare Contacts
National Organization for Rare Diseases, Patient Assistance Programs
National Rehabilitation Information Center, Resources for the Public
NeedyMeds.org
Partnership for Prescription Assistance
Social Security Administration: Disability Benefits
Social Security Administration: Employment Support Programs
Research Studies and Getting Involved
ClinicalTrials.gov
Coalition for Pulmonary Fibrosis
Foundation for Sarcoidosis Research
Rare Diseases Clinical Research Network
Scleroderma Foundation
Stanford University Center for Interstitial Lung Disease Research
The LAM Foundation
UCSF Interstitial Lung Disease Program Research
Volunteers of America
Lung Transplantation
American Society of Transplantation
UCSF Lung Transplant Program
United Network for Organ Sharing
Advanced Care
End of Life Resources, AARP
National Hospice and Palliative Care Organization
Sacramento Healthcare Decisions
Tool Kit for Health Care Advanced Planning, American Bar Association
Many of the organizations listed above have newsletters to which you can subscribe, along with the following:
Reviewed by health care specialists at UCSF Medical Center.
Last updated June 11, 2009
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