Web Sites and Online Resources
Medical Associations/Societies
American Association of Cardiovascular and Pulmonary Rehabilitation
www.aacvpr.org
American College of Chest Physicians
www.chestnet.org
American Thoracic Society (ATS)
www.thoracic.org
Government Agencies
National Heart, Lung, and Blood Institute (NHLBI)
www.nhlbi.nih.gov
National Institutes of Health (Medline)
www.nlm.nih.gov/medlineplus/pulmonaryfibrosis.html (pulmonary fibrosis information)
National Library of Medicine
www.nlm.nih.gov/medlineplus/druginformation.html (drug information)
Clinical Study Results - Voluntary database of clinical trial results
www.clinicalstudyresults.org
Food and Drug Administration (FDA)
www.fda.gov
Treatment and Research Institutions
Centerwatch - www.centerwatch.com - An international listing of clinical research trials, and physicians and medical centers performing clinical research
University of Alabama at Birmingham
http://www.health.uab.edu/ (search for "IPF")
Univ. Colorado Health Sciences Center- Dept. of Pulmonary & Critical Care Medicine
http://www.coloradopulmonarycriticalcare.org/
Duke University
www.fpf.duke.edu
Emory Center for the Treatment and Study of Interstitial Lung Disease
http://www.emoryhealthcare.org/departments/lung/index.html
Inova Fairfax Hospital
General info: www.inova.org/inovapublic.srt/ifh/index.jsp
Lung Transplant info: www.inova.org/lung
University of Iowa (Virtual Hospital)
www.vh.org/adult/patient/internalmedicine/interstitiallung/index.html
Univ. of Miami Medical Center Dept. of Pulmonary & Critical Care Medicine
http://www.med.miami.edu/med/pulmonarymed/
National Jewish Medical and Research Center
www.njc.org/diseases/dt10.html
University of Pennsylvania Medical Center- Lung Center
http://www.uphs.upenn.edu/lungctr/
University of Pittsburgh Medical Center
http://ipf.upmc.com
UC-San Francisco/San Francisco General Hospital
http://pulmonary.ucsf.edu/
Univ. of Washington Dept. of Pulmonary & Critical Care Medicine
http://depts.washington.edu/pulmcc/
University of Minnesota Center for Advanced Lung Disease
http://www.cald.umn.edu/
Vanderbilt University Medical Center
http://www.mc.vanderbilt.edu/root/vumc.php?site=ipfcenter&doc=6516
Patient Education and Support Organizations
Pulmonary Fibrosis Friends Online Forum
http://health.groups.yahoo.com/group/PFF/
American Lung Association
www.lungusa.org/diseases/pulmfibrosis.html
American Lung Association of California
www.californialung.org
Breathin' Easy
http://www.oxygen4travel.com/
Chronic Lung Disease Forum
www.cheshire-med.com/programs/pulrehab/forum/cldforum.html
Daily Strength.org Online IPF Furum
http://dailystrength.org/discussions/Pulmonary_Fibrosis/messages
Dynamics in Healthcare (IPF section)
www.epler.com
Huff 'n Puff Online Lung Disease Forum
http://www.huff-n-puff.net/newforum/
MDLinx.com
http://www.pulmonologylinx.com
Needy Meds.com
www.needymeds.com
The Pulmonary Paper
www.pulmonarypaper.org
Young Lung Online Support
Online Support: www.geocities.com/younglungz
Email Group: www.topica.com/lists/younglung
Other lung health organizations also have chapters and groups that support patients with IPF. Click here to request information on support services that may be available for IPF patients in your community, or call us at (888) 222-8541.
Resources for Patient Assistance RX Programs and Discount Card Programs
BenefitsCheckUp
www.benefitsCheckUp.org
Free, online screening tool to more than 240 RX saving programs.
Volunteers in Health Care:
(877) 844-8442
Guide to Patient Assistance Programs.
NeedyMeds:
www.needymeds.com
Directory of Patient Assistance Programs
Pharmaceutical Research and Manufacturers of America (PhRMA):
www.Phrma.org
Directory of Patient Assistance Programs
RxHope:
www.rxhope.org
Information and application forms for Patient Assistance Programs.
Health Resources and Services:
(888) ASH-HRSA (888) 275-4722
Referral source for community health centers that may offer RX assistance.
Local Area Agencies on Aging:
www.eldercare.gov or (800) 677-1116.
Provides assistance to patients 65 and older.
Finding a Doctor
American Medical Association (AMA Physician Select)
www.ama-assn.org
Lung Transplant Information and Support
Second Wind Lung Transplant Association
www.2ndwind.org
United Network for Organ Sharing (UNOS)
www.unos.org
Caregiver Support Organizations
Caregiving.com
www.caregiving.com
Well Spouse Foundation
www.wellspouse.org
Inova Fairfax Hospital
http://www.inova.org/inovapublic.srt/transplant/index.jsp
End-of-Life Support Organizations
Aging With Dignity
www.agingwithdignity.org
American Hospice and Palliative Care Organization
www.nhpo.org
Patient Assistance for Medical Air Transportation
National Patient Travel Center
www.patienttravel.org - or 800-296-1217
Nonprofit organization assisting financially-needy patients with financial assistance to travel for specialized medical evaluations, diagnosis or treatment that may require medical air transportation. 24-hour toll free 800-296-1217.
International Organizations
European Respiratory Society (ERS)
http://dev.ersnet.org/
4, Ave Sainte-Luce
CH-1003, Lausanne
Switzerland
Tel: +41 21 213 01 01
Fax: +41 21 213 01 00
info@ersnet.org
Irish Lung Fibrosis Association
www.ilfa.ie
4 Trafalger Trc.
Monkstown, CO. Dublin, Irleand
jegan@matter.ie.ilfa.com
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