Resource Links

Pulmonary Fibrosis Advocates focuses exclusively on advocacy for the disease. We are pleased to partner with talent-rich organizations to enhance medical research that will speed the discovery of an effective treatment for P.F.

1. Pulmonary Fibrosis Events

  • Endorsed by the PFA ~ a non-profit 501(c)(3) with 100% of donations dedicated to PF research & advocacy

2. IPFTodayLogo

www.ipftoday.com

  • Endorsed by the PFA ~ A comprehensive information resource run by a PF patient (no fundraising)

3. Pulmonary fibrosis symptoms and experiences straight from patients like you 2014-04-13 18-25-40

www.patientslikeme.com

  • Endorsed by the PFA as an innovative, progressive research partner contributing to solving the mystery of rare diseases including PF

4. ResearchAmericaLogo

www.researchamerica.org

5. m_logo (NIH-sponsored)

www.nlm.nih.gov/medlineplus

6. nhlbi-logo

www.nhlbi.nih.gov/health/health-topics/topics/ipf/

  • Taxpayer funded government agency (although, only 0.0818% of its $31 billion budget goes to PF research)

7. Idiopathic pulmonary fibrosis - Wikipedia, the free encyclopedia 2014-04-13 18-31-56

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

  • Like all Wiki articles on any subject, may be edited by freelancers without specific PF knowledge; use with care

8. mayologo

www.mayoclinic.org

  • Highly-respected Mayo is only one of more than 50 credible research hospitals in 27 states doing significant research in pulmonary fibrosis

9. logo

www.webmd.com/lung/pulmonary-fibrosis

  • a good private, for-profit source for basic medical information

10. Idiopathic Pulmonary Fibrosis (IPF), the Community - RareConnect 2014-04-13 18-35-40

rareconnect.org/en/community/idiopathic-pulmonary-fibrosis

  • A partnership of the National Organization for Rare Diseases (NORD – US) and Eurodis (Rare Diseases Europe); the PFA is a participating partner in Rare Connect

11. Welcome - Rally for Medical Research 2014-04-13 18-37-26

rallyformedicalresearch.org

  • a coalition of more than 180 disease advocacy organizations (including the PFA) uniting in one Capitol Hill Advocacy Day annually (09/18 in 2014)

12. Know IPF Now - Idiopathic Pulmonary Fibrosis - KnowIPFnow.com 2014-04-13 18-39-40

www.knowipfnow.com

  • Note: drug company sponsored (by Intermune) which has a partnership with the PFF (#13 below); IPF-Specific Site

13. pff2_logo

www.pulmonaryfibrosis.org

  • A good resource for PF patients. Note: a disappointingly low % of the funds raised by the PFF are actually spent on research (and even less on advocacy)

14. header-logo

www.lung.org/lung-disease/pulmonary-fibrosis/

  • Helpful basic information, but the ALA’s focus is on lung cancers, not pulmonary fibrosis; it contributes little to PF research and nothing to PF advocacy

15. logo

www.boehringer-ingelheim.com/news/news_topics/idiopathic_pulmonary_fibrosis.html#

    A drug company resource that supports PF research (and, which also has a partnering relationship with the PFF, #12 above)