Guest guest Posted October 17, 2009 Report Share Posted October 17, 2009 Miranda -- i read that on either the coalition for pulmonary fibrosis website or on the pulmonary fibrosis foundation website another idea just popped into my head : how about a monthly or bi monthly publication like the "Pulmonary Paper" -- it has one page for PF, and pages for helpful tips, plus lots of advertisements for equipment (maybe that is one of the funding sources) we can acknowledge COPD, et al, but focus on PF Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: ???What to say???To: Breathe-Support Date: Saturday, October 17, 2009, 5:53 PM Hi You guys,Ok so I have been tslking about IPF on my Facebook page and to my family and other people when I go out. I know the facts about IPF like what it is and the specifics about symptoms and the transplant and stuff. But my question is.....Where do I find info like statistics and other info to tell people ? Like I heard that as many people die from PF as Breast cancer each year...Is that true ? I want to make sure I say the truth and advocate for our disease. Thanks bunches,MirandaLA / 29 next weekIPF 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2009 Report Share Posted October 17, 2009 Miranda, If you go to the Pulmonary Fibrosis Foundations website you will find some of the type of information you are looking for. It is true that 40,000 people die from pulmonary fibrosis every year which is pretty much the same as the number of people that die of breast cancer. Stunning isn't it? At any given time there are around half a million people in the US with pf. www.pulmonaryfibroisis.org You can also give the Foundation a call and ask them to send you a bunch of brochures. They have good information and are handy to give to people who ask us questions. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sat, October 17, 2009 5:53:21 PMSubject: ???What to say??? Hi You guys,Ok so I have been tslking about IPF on my Facebook page and to my family and other people when I go out. I know the facts about IPF like what it is and the specifics about symptoms and the transplant and stuff. But my question is.....Where do I find info like statistics and other info to tell people ? Like I heard that as many people die from PF as Breast cancer each year...Is that true ? I want to make sure I say the truth and advocate for our disease. Thanks bunches,MirandaLA / 29 next weekIPF 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2009 Report Share Posted October 17, 2009 Thank You. Hope everyone is having a Great weekend ! Miranda > > Miranda, > If you go to the Pulmonary Fibrosis Foundations website you will find some of the type of information you are looking for. It is true that 40,000 people die from pulmonary fibrosis every year which is pretty much the same as the number of people that die of breast cancer. Stunning isn't it? At any given time there are around half a million people in the US with pf. > www.pulmonaryfibroisis.org > You can also give the Foundation a call and ask them to send you a bunch of brochures. They have good information and are handy to give to people who ask us questions. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > ________________________________ > > To: Breathe-Support > Sent: Sat, October 17, 2009 5:53:21 PM > Subject: ???What to say??? > > > Hi You guys, > > Ok so I have been tslking about IPF on my Facebook page and to my family and other people when I go out. I know the facts about IPF like what it is and the specifics about symptoms and the transplant and stuff. But my question is.....Where do I find info like statistics and other info to tell people ? Like I heard that as many people die from PF as Breast cancer each year...Is that true ? I want to make sure I say the truth and advocate for our disease. > > Thanks bunches, > Miranda > LA / 29 next week > IPF 05 > Quote Link to comment Share on other sites More sharing options...
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