Your links to organizations, advice, information etc. are very welcome!!
 
You may have additional questions about pulmonary fibrosis and IPF and if so, you may find the following Web sites helpful. This is only a partial list but by searching the Internet, you can find other sites that may help you. We would appreciate it if you would send us other links when you find them so that we can constantly improve this resource. If you don't live in the USA please sent your links too even if they are in a different language. We will include them in our international section. info@ipftoday.com 

Categories:

1. General
2. Medication
3. Pharmaceutical Companies
4. Lung transplant
5. Caregivers
6. Medical supplies
7. Insurance companies
8. Information & articles
9. International resources
10. Blogs & forums

1. GENERAL

The Pulmonary Fibrosis Foundation’s mission is to find a cure for idiopathic pulmonary fibrosis (IPF) by funding research, advocating for pulmonary fibrosis issues, promoting disease awareness, and providing a compassionate environment for supporting patients and their loved ones. www.pulmonaryfibrosis.org

American Thoracic Society                                                                      www.thoracic.org/

American College of Chest Physicians                                                   www.chestnet.org

The American Association of Cardiovascular and Pulmonary Rehabilitation www.aacvpr.org

The American Lung Association offers information and resources for improving lung health. - www.lungusa.org

Centers for Disease Control and Prevention - www.cdc.gov

American Board of Medical Specialties - www.abms.org 

American Board of Internal Medicine - www.abim.org 

Medline Plus is a service of the US National Library of Medicine and the National Institutes of Health that provides detailed content on pulmonary fibrosis as well as related links. www.nlm.nih.gov

National Heart, Lung, and Blood Institute https://www.nhlbi.nih.gov/

FDA - US Food and Drug Administration - https://www.fda.gov/

Pulmonary Fibrosis Association of Texas, Inc. - http://www.pfatx.org/

Travel -TSA - Transportation Security Administration - http://www.tsa.gov

Pulmonary Fibrosis Advocates - www.pfadvocates.org

Life with IPF - https://www.lifewithipf.com/

Sounds of IPF - www.soundsofipf.com



2. MEDICATION & CLINICAL TRIALS & PRECLINICAL TRIALS            

OFEV - BIBF 1120 - Boehringer Ingelheim Pharmaceuticals –  FDA Approved

https://www.ofev.com/

ESBRIET - Pirfenidone - Genentech - FDA Approved

https://www.esbriet.com/

Information and Articles

Medications - www.rxlist.com/script/main/hp.asp

Clinical Trials - ClinicalTrials.gov.url

http--www.fda.gov-downloads-AdvisoryCommittees-CommitteesMeetingMaterials-Drugs-Pulmonary-AllergyDrugsAdvisoryCommittee-UCM203083.pdf.url

Prednisone

http://en.wikipedia.org/wiki/Prednisone

http://www.nhlbi.nih.gov/news/press-releases/supplement/questions-and-answers-panther-ipf-study

Azathioprine

http://en.wikipedia.org/wiki/Azathioprine

http://www.nhlbi.nih.gov/news/press-releases/supplement/questions-and-answers-panther-ipf-study

Cytoxan

http://en.wikipedia.org/wiki/Cyclophosphamide

N-Acetyl-Cysteine

ifigenia NAC study.url

Panther IPF - NAC trial

Esbriet & Inhaled NAC http://www.medscape.com/viewarticle/842863

http://www.lef.org/magazine/mag2010/may2010_N-Acetyl-Cysteine_01.htm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2774307/

http://www.clinicaltrials.gov/ct2/show/NCT00650091?term=NAC&rank=36 

Inhaled NAC – Clinicaltrials.gov - Goverment test.url

N-Acetyl Cysteine - drug interactions.url

NAC therapy shows promise for patients with mild IPF.url

Nac.url

ACETYLCYSTEINE - INHALATION-ORAL side effects, medical uses, and drug interactions..url

http://www.if-pan.krakow.pl/pjp/pdf/2010/1_131.pdf 

Homspera - Immuneregen

http://www.immuneregen.com/fibrosis.php

http--www.pharmpro.com-news-2010-03-government-and-regulatory-ImmuneRegen-BioSciences-Submits-Homspera-for-FDA-Orphan-Drug-Product-Designation-for-the-Treatment-of-Idiopathic-Pulmonary-Fibrosis-.url

Warfarin -

http://clinicaltrials.gov/ct2/show/NCT00957242?term=warfarin&rank=62

FG-3019 - Fibrogen - Phase I

Lung & Other Fibrosis - FibroGen, Inc..url

Macitentan - Actelion - Phase II

http://clinicaltrials.gov/ct2/results?term=macitentan

http://www1.actelion.com/en/scientists/development-pipeline/phase-2/macitentan.page

Macitentan Phase II.url

IW001 - ImmuneWorks – Phase II

Firm ImmuneWorks Begins National Clinical Trial for New Idiopathic Pulmonary Fibrosis (IPF) Treatment Indy-Biz.url

STX-100 – Stromedix – Phase II

http://www.dddmag.com/news-FDA-Grants-Orphan-Drug-Status-to-STX-100-9110.aspx

http://www.stromedix.com/Stromedix_expands_fibrosis_pipeline.pdf 

AM152 - Amira Pharmaceuticals, Inc. – Phase II

http://www.amirapharm.com/articles/AM152 Orphan Drug.html

DIDN’T WORK??

Sildenafil - Viagra

www.nationaljewish.org/about/mediacenter/pressreleases/2010/sildenafil-ipf.aspx

Ambrisentan - Letaris 

Letairis Ambrisentan - Drugs & Treatments - Revolution Health.url

3. PHARMACEUTICAL COMPANIES RESEARCHING IPF

Stromedix Inc. - Drug = STX-100 – Phase II

http://www.stromedix.com/

Neopharm – Drug = IL13-PE38 – Not yet in Fase I-

www.neopharm.com/index.php?option=com_content&task=view&id=15&Itemid=29

ImmuneWorks – Drug = IW001 – Phase II

www.immuneworks.com

FibroGen, Inc -  Drug = FG-3019 – Phase II

Fibrotic Disease - FibroGen, Inc..url

Amira Pharmaceuticals, Inc. – Drug AM152 - Phase I

http://www.amirapharm.com

ImmuneRegen BioSciences, Inc. – Drug Homspera – Pre Clinical Trial

http://www.immuneregen.com

Actelion Pharmaceuticals Ltd – Drug Macitentan - Phase II

http://www1.actelion.com

4. LUNG TRANSPLANT

United Network for Organ Sharing (UNOS) www.unos.org

Second Wind Lung Transplant Association, Inc. www.2ndwind.org

Newlungs.com offers an extensive list of links to resources about lung transplantation on the Internet. www.newlungs.com

National Foundation for Transplants www.transplants.org

National Transplant Assistance Fund www.transplantfund.org

World  Transplant Games Federation http://www.wtgf.org/

Lung transplantation An overview.url

SRTR -- Program and OPO Specific Reports, Scientific Registry of Transplant Recipients.url

Transplant Med savings.com.url

TransplantExperience.com.url

http://medicalxpress.com/news/2011-12-surgeons-vivo-lung-transplants.html

5. CAREGIVERS

National Family Caregivers Association

www.nfcacares.org

CaringBridge 

www.caringbridge.org

Family Caregiver Alliance

www.caregiver.org

Wellspouse Organization

www.wellspouse.org

6. OXYGEN & MEDICAL SUPPLIES 

A guide for travelers with using portable oxygen, including tips and articles on traveling by air, sea, rail, and road.

child-foundation.org/wp-content/uploads/2016/07/TravelingwithOxygen.pdf

The National Home Oxygen Patient's Association was established in the late 1990s and is devoted exclusively to improving the lives of people across the country who require supplementary oxygen on a regular basis.

https://www.oxygenconcentratorstore.com/breathe-easy/resources/nhopa/

Home Oxygen Companies.com is a free online database that provides information to consumers about all of the different Home Oxygen Companies in the United States.

http://www.homeoxygencompanies.com/

Medicare: Oxygen equipment & accessories

https://www.medicare.gov/coverage/oxygen-equipment-accessories

7. INSURANCE COMPANIES

Medicare Rights Center

www.healthcare.gov 

www.medicarerights.org

Travel Insurance

Clements Individuals Global Health.url

Health Insurance and Coverage Help for Consumers Everywhere.url

Social Security's Compassionate Allowances program.url

http://www.usgovernmentbenefits.org/hd/index.php?t=new+health+plan+pre-existing+conditions 

June 4 2011 U.S. to Lower Public Insurance Premiums for People with CF and other Pre-Existing Conditions

http://health.usnews.com/health-news/managing-your-healthcare/policy/articles/2011/05/31/us-makes-it-easier-to-get-insurance-with-pre-existing-conditions

 

8. INFORMATION & ARTICLES

7% Hypertonic Saline for Nebulization, Health Facts For You, UW Health, University of Wisconsin Hospital, Madison.url

Antioxidants as Potential Therapeutics for Lung Fibrosis.url

Ask an Expert Desquamative interstitial lung disease.url

BUILD 3 Bosentan Use in Interstitial Lung Disease - Full Text View - ClinicalTrials.gov.url

Cancer survivor aims to raze barriers with app - Yahoo! Finance.url

Chelation.url

CURCUMIN

Curcumin - Linus Pauling Institute at Oregon State University.url

curcumin Definition from Answers.com.url

Curry Powder Ingredient Kills Cancer Cells.url

Curcumin IPF research Januari 2010

http://journal.publications.chestnet.org/article.aspx?articleid=1086881



Find a Pulmonologist-Pulmonary Doctor Near You - MDLocator - Pulmonology Channel.url

How to Find a Pulmonologist eHow.com.url

Find Pulmonologist.url

Pulmonary Fibrosis Foundation - Research Centers

http://health.usnews.com/best-hospitals 

Glutathione Experts - Articles on COPD (Chronic Obstructive Pulmonary Disease) & Lung Disorders.url

Healing Process In Lung Disease Patients - Health News - redOrbit.url

Idiopathic pulmonary fibrosis - Wikipedia, the free encyclopedia.url

Murine models of pulmonary fibrosis -- Moore and Hogaboam 294 (2) L152 -- AJP - Lung Cellular and Molecular Physiology.url

Non-Specific Interstitial Pneumonia (NSIP).url

Protein May Be Strongest Indicator of Rare Lung Disease, Study Shows - Wellsphere.url

Pulmonary Fibrosis Symptoms, Causes, Prognosis, and Life Expectancy by MedicineNet.com.url

Pulmonary Sarcoidosis.url

Quick Reference - Systematic Evaluation of PFTs.url

Researchers discover big role for microRNA in lethal lung fibrosis.url

Roger Stevens' Idiopathic Pulmonary Fibrosis Homepage.url

Test could predict which idiopathic pulmonary fibrosis patients will become severely ill.url

vanderbilt ipf center

http://www.ucsfhealth.org/conditions/idiopathic_pulmonary_fibrosis/ 

http://blueprint.duhs.duke.edu/?p=374

Ganciclovir Antiviral Therapy in Advanced Idiopathic Pulmonary Fibrosis: An Open Pilot Study http://www.hindawi.com/journals/pm/2011/240805/

9. INTERNATIONAL RESOURCES

Belangenvereniging Longfibrosepatiënten Nederland.url

European Medicines Agency - Pending EC decisions - CHMP summary of positive opinion for Esbriet.url

European Respiratory Society (ERS) http://www.ersnet.org

European Respiratory Review

European Respiratory Journal.url

Japanese Respiratory Society (JRS) http://www.jrs.or.jp/home/modules/english/index.php?content_id=1

Idiopathic Pulmonary Fibrosis--My Story.url

IPF and doing OK.url

experimental-stem-cell-therapy-raises-hope-for-pulmonary-fibrosis-patients

10. BLOGS & FORUMS

http://www.huff-n-puff.net/newforum/index.php

http://health.groups.yahoo.com/group/PFF/





DISCLAIMER:The information provided in this site is for educational purposes only, and it is not intended nor implied to be a substitute for professional medical advice. Always consult your own physician or health care provider with any questions you may have regarding a medical condition.

It's not the load that breaks you down,

it's the way you carry it.

Lena Horne

 “When you remove the impossible, what remains - however improbable, must then be the truth.” 

Spock - Star Trek